Tag Archive | CPAP

Four Years Ago Today, A Transplant Tale…

Four years ago today my son, Josiah, got his Liver Transplant.  Today he is just 3 days post-operatively from his most recent surgery, the 4th stage of a birth defect repair. Being back in the midst of a more intense medical scenario currently has brought the circumstances of the Transplant more to the forefront on this anniversary.  So I thought it might be interesting to re-visit some of the key parts of that Transplant Tale.

The Transplant Saga “began”, at least that’s  when it seemed to begin, with a couple of medical scans that a judicious physician ordered up…but I don’t now recall the original reason for the abdominal scan.  However that scan revealed a Liver that was filled with Masses (Tumors) & this doctor thought it prudent to then scan his brain to see if there was some type of liver associated brain damage–Encephalopathy.  This scan of the Brain revealed an unexpected finding, a Tumor on the Pituitary Gland.  We got the phone calls about the Liver Masses/Tumors & the Brain Tumor like a day or two apart, right before Thanksgiving 2009…but my memory has merged those calls into the seemingly “same day” Liver & Brain Tumors news…not accurate but “true” emotionally, because we hadn’t processed the first blow before the hammer fell again.

What I hope to do now is to find some of the posts I did at the more medically based blog I’ve been keeping at


to give some of a representation of that Journey that lead to Josiah’s Liver Transplant. This might take a bit of time & mental energy so I hope I can actually post this on July 30 since July 30, 2013 was the date of my son’s Liver Transplant…[note: I will copy items “as is”, warts & all, but will snip sections of text & use Bolding &/or Text Size to provide emphasis, etc. but won’t modify what is written; if wanting to add a present day insight that will be included in these brackets & have 7/17 listed, I hope]…

Here is some background on the situation as I’d written it up on the “About” page on the Jazzman blog, written in 2012 roughly:

Years ago it was thought that Josiah had some type of blockage in his portal vein (the main blood vessel into the liver). However after a number of tests and evaluations by various specialists they determined that he basically didn’t have a portal vein, per se, but just “collateral venous perfusion” of the liver. For some reason this condition was not followed up on further at that time so it just apparently fell off the radar.

In late 2009 Josiah underwent an abdominal scan to image his kidneys to see if there might be an explanation for his very high blood pressure, as this was not accounted for by his various (known) cardiac conditions. Incidentally to this kidney imaging it was found that his liver was filled with “masses”. At the same time other testing revealed the presence of a tumor on his pituitary gland.

Christmas 2009 Josiah and I were in the hospital for him to undergo a liver biopsy to see if they could determine the type of tissue that these masses were composed of. He had about a dozen tissue samples taken from a number of different looking masses and the results then said that all of these masses were “normal liver tissue”.

We were at that time seeing a GI (gastrointestinal doctor) in the Liver Transplant Clinic to follow up on these issues. Based on the biopsy results they said Josiah was NOT a candidate for a liver transplant. In the meantime, in June of 2010 he underwent surgery for removal of the brain tumor (Transphenoidal Resection of Pituitary Adenoma–through the nose removal of the pituitary tumor).

After that things seemed to simmer down, relatively, for a while. However, this past September of 2011 the Liver Transplant Team determined that Josiah would now need a Liver Transplant. This was based on a re-assessment of his actual liver mass tissue from the prior biopsy as well as on the new imaging data showing growth and changes in the numerous liver masses.

Thus began the more direct journey of preparing for and anticipating a Liver Transplant for Josiah. This process has been going on pretty directly since September and has had various ups and downs. We are currently in the “holding pattern” of waiting for an appropriate liver for Josiah and as such need to respond to any Liver Transplant offer phone call within One Hour, and be at the hospital preparing for said transplant within Five Hours of the initial call.

This is a very strange place to be for a family that is quite used to dealing with surgical situations, given Josiah’s previous 15, and his brothers’ combined 5…however this Transplant Wait is very different in that there is no date on the calendar that we can anticipate. As such we are truly in a waiting game with complete uncertainty as to when this “bomb” will go off within our family’s life…

Here is the link to the above copied info   http://www.carepages.com/carepages/JournalingForTheJazzman/patient

At the time when we found out about the Brain Tumor & the Liver Masses/Tumors I wrote a series of emails to a large group of people who had previously been praying for our family as we went through a battle involving a Special Education Due Process Hearing Request & subsequent Settlement.  I copied that series of emails to the Jazzman blog to give some backstory to why then Josiah needed to get a Liver Transplant…

Details in this section that were basically encapsulated in the “About” info italicized above…

From Historical Email #1, found here now:  http://www.carepages.com/carepages/JournalingForTheJazzman/updates/3344657

Historical Email #1

Posted Jul 11, 2012 4:48am

Sent: Sat, November 28, 2009 9:52:18 PM
Subject: Prayer Request for our son Josiah

As most of you know, our son Josiah has been a highly complicated child from a medical standpoint. This summer he experienced his 13th surgery–making him average one per year, thus far. He is to be turning 14 next Friday, December 4.

Over the last several years Josiah has been experiencing high blood pressure, that is unexplained by his cardiac complexities. Recently we saw Nephrology doctors to determine whether or not there would be kidney reasons for this condition. One scan used to help diagnose these concerns was an abdominal ultrasound, where an unanticipate finding turned up–“masses” on his liver. The Nephrology doctors also used the phrase “Echogenic Kidney Disease”

Because of the liver masses, we were referred to a GI doctor who ordered further testing; bloodwork and MRIs and an MRA. The MRA (Magnetic Resonance Angiogram, I think) is used to map the blood vessels. We already know that he has vascular abnormalities around his liver and his heart from prior testing from years ago. The MRIs were to be of both the abdomen and the head. The reason to examine his head is that there is a known brain condition associated with hepatic (liver) vascular (blood vessel) abnormalities–and the GI doctor wanted to see if this, too, impacted Josiah.

Josiah went to the hospital this past Monday evening for these MR scans, as he needed to be put under general anesthesia for these procedures–we didn’t even get home until after midnight! The following day, one of the Nephrology doctors called with some of the results; at that time only the head MRI results were available. He said that Josiah did have the abnormality of the brain’s basal ganglia [7/17 note, I totally forgot about this structural abnormality & wonder if it may need attention???]  (I believe he used the term Abernathy to describe it). In addition they noticed another abnormality of the head.

He initially used the term “mass”, perhaps to soften the blow. However, upon further discussion he admitted that Josiah did in fact have a BRAIN TUMOR. This tumor is pressing up against his pituitary gland. He assured me that it wasn’t an “emergent” (emergency?) condition or we would have been coming back to the hospital immediately. However we were to be seen by Pediatric Neurosurgery on Monday.

Another follow up call came the following day from Josiah’s neurologist, who follows Josiah at the Sleep Clinic (as part of a team that helps treat Josiah for several sleep disorders). He had cursorily reviewed the head MRIs and was wanting to make sure we were going to be hooked into visiting with the correct people. In fact during our conversation he confirmed that Josiah was also scheduled to see (this neurologist’s preferred choice of) a Pediatric Neurological Oncologist, who is a specialist in the area of
children’s brain tumors.

So, as of today, the Saturday after Thanksgiving, we do Not yet know the results of the abdominal scans nor bloodwork as pertains to the liver. We do know that the brain tumor is present. Hopefully the visit(s) with the neurological specialists and further testing, if needed, will help decide what comes next.

Many of you know the Lord and I would greatly appreciate your prayers on behalf of Josiah!!!

Many of you received some (lengthy) communications from me during the heat of the Special Education battles of the last several years. I wanted you to know that those labors are continuing to bear fruit. Josiah is in regular ed classes 2/3 of the day now, with Para-Pro support. He only takes Language Arts and Math (where he has a severe learning disability) in the Special Ed department. His recent report card was mostly Bs! He also is doing most of his homework primarily independantly–and that is a major triumph!

Overall, Josiah has made some tremendous gains in many areas. Thank you to so many of you who kept us in your prayers during many of the challenging times. God is still faithful and he is not finished with Josiah yet–or any of us, for that matter.

May God Bless You and your families during this celebratory holiday season. We all have much to be thankful for.

Blessings, and Gratitude,

Valerie Curren

Here will be some snippets of the #2 email from this site  http://www.carepages.com/carepages/JournalingForTheJazzman/updates/3344658

Historical Email #2

Posted Jul 11, 2012 4:50am

Sent: Tue, December 1, 2009 6:30:43 PM
Subject: Update #1 Re: Prayer Request for our son Josiah

Yesterday Josiah and I, accompanied by my mother, Elaine Stoddard, met with two Pediatric Neurological specialists (one a Neurosurgeon and one a Neurological Oncologist). We were able to view some of the MRI head scans on the computer and they printed off some images for me to share with the family.

The tumor is about 16mm at its largest point and somewhat envelopes the pituitary gland. It is pressing up against the optic nerve (possibly surrounding it) and encroaching into the place where the carotid arteries are passing along side the pituitary.

The tissue does Not appear to be of an aggressive nature, although it may, in fact, be some type of “good” cancer. The neurosurgeon was quick to point out that cancers in the brain do not reflect similarly to cancers in other parts of the body. The exact term they used to describe what type of tumor he has was an “agroma” (that may not be how it is spelled). It is also possible that it is not actually a tumor at all but some type of overgrowth of the pituitary gland itself, though this more desirable scenario is less likely to be what is happening with Josiah.

It is also quite unlikely that the tumor is of some other type of more aggressive tissue (a “pharyngeoma”–spelling unknown by me). Further tests will be ordered to confirm the ruling out of that type of tissue.

The upshot of things from the brain is that he now needs to see a Pediatric Neurological Opthalmologist, and an appointment (we were warned should take 4-5 hours–Yikes!) has been scheduled to that end for next week. We also need to see a Pediatric Endocrinologist and that referral has been sent into the U of M system. They did also order some blood tests which Josiah had done yesterday.

This morning I received a call from the GI doctor who had ordered the original MR scans. She had been unable to reach me prior to the Holiday break and was just back from a long weekend herself. So, on the liver front Josiah is experiencing some type of pretty active cellular growth going on there. However, based on the bloodwork that’s already come through all the cancer indicators that she mentioned to me came back as almost undetectable–this means that it is pretty unlikely that what’s happening in the liver is some type of cancer. It’s possible that the abnormalities can be explained by his atypical blood vessels.

It’s probably a good thing that we hadn’t been able to speak before the weekend. She alluded to the radiological report on the abdomen and apparently the radiologist postulated that Josiah was actually experiencing some type of secondary (metastisizing) cancer in his liver with the original cancer location likely yet unknown. The bloodwork we discussed now seems to rule out this much more scary liver cancer scenario.

What remains to do regarding the liver is to meet with some of the Liver Transplant Team doctors. There is a particular Pediatric Gastroenterologist Hepatacologist (forgive my spelling fancies here) that has already reviewed much of the scanning data on Josiah and that the original GI doctor is referring us to. We will have a joint appointment with the above specialist and a Liver Transplant Surgeon and discuss just what exactly is going on with the liver. At a minimum it seems likely that there will be some type of surgery to attempt to make his blood vessel configuration around the liver somewhat more normal. At this time, to my knowledge, a liver transplant itself is not what we are currently facing.

Also, he will have his appointment with the Geneticist moved up since these new findings will impact what further genetic testing is ordered up. I don’t know when we’ll see Genetics yet, but guess it might be by sometime in the spring.

Hopefully the other pending appointments will come together in such a way that we will know more definitively what the next steps for the brain and liver are within the next month or so.

Thanks so much to all of you who have been, or are now, lifting Josiah (and our family) in prayer. God is giving us the grace and strength to do what has to be done. I also have appreciated your words of encouragement. You are each a blessing to me…

Blessings to all,



Here’s part of Email #3 from this site  http://www.carepages.com/carepages/JournalingForTheJazzman/updates/3344659


Historical Email #3

Posted Jul 11, 2012 4:51am

Sent: Mon, December 7, 2009 5:31:10 PM
Subject: Update #2 Re: Prayer Request for our son Josiah

Hello again to everyone.

First I have a correction from previous correspondence. The type of tumor that Josiah likely has is called an “ADENOMA” not an “agroma”–a word that I apparently made up!

[note, I snipped the body of the email to focus on Transplant, please go to the Jazzman site if you are interested in the more complex details of Josiah’s concurrent medical journey in other disciplines–Thanks]

PS In speaking with the Liver Transplant Intake Coordinator, she said that this clinic typically follows patients with abnormal Portal Vein issues. It made me wonder why all those years ago we were never referred to this Team when his Portal Vein abnormalities came to light. However, as I try to make sense (if that is even possible) of these many things it seems to me that it is actually a blessing that we did not receive such a referral. Had that happened way back (possibly about a decade ago) it is highly unlikely that the brain tumor would have been present then. In fact, had they done the brain imaging to check with the associated abnormalities of the brain at the time, we may never have unearthed the tumor issue until some types of symptoms were present. Since Josiah has so many medical (and other) complexities, it is possible that even if there were some symptoms of a tumor, they may have been blamed on some other of his many conditions. So, the bottom line is that I CHOOSE TO BELIEVE THAT THE LORD HAS EVEN BEEN INVOLVED IN THE TIMING of Josiah’s many medical services…and even working within our mistakes.

To that end, I had been mentally kicking myself for not having followed through on the original Neprology referral made by Cardiology way back nearly three years ago now. Michael was kind enough to point out that I was in the midst of the major Special Ed battle at the time, so that my “dropping the ball” was entirely understandable, given all the things that were (and were not) going on then. In fact, had I followed through with the kidney doctors then it would have also been unlikely that the brain tumor would have come to light, given the liklihood of its 1-1 1/2 year speculated existance. Fortunately the Lord is bigger than our “mistakes” and He is Still working in all things, for our good and his glory! Blessings again…(and as always, please forgive my mistakes here as I’m writing on one of the hospital computers with Josiah [im]patiently waiting, so I don’t want to take further time to work on fixing my mistakes above)…


From Historical Email #5   from this site:   http://www.carepages.com/carepages/JournalingForTheJazzman/updates/3344661

Please Note that I am copying this posting in its entirety as it represents our first Transplant Clinic Visit…

Historical Email #5

Posted Jul 11, 2012 4:54am

Sent: Tue, December 15, 2009 2:02:49 PM
Subject: Update #4 Re: Prayer Request for our son Josiah

Hello and Blessing to all of you who are continuing to keep Josiah and our family in your thoughts and prayers. Thanks so much!

We just had the Liver Transplant Team visit. We were to spend about 4 hours in this clinic but didn’t need that entire time.

First we visited with the Nurse who did some basic history and focused most of her questioning Josiah’s way. She made a point of including him and emphasizing that given his age, of 14 years, that he would be expected to be an active participant in the visit. I had to help “translate” a few items for him, but overall he did pretty well. It was good to see him steping into this more mature role of some (degree of) self-determination.

Next we had a nice visit with the Liver Transplant Surgeon. He displayed a very engaging personality and endeavored to really draw Josiah out and include him in discussions too. The bottom line from his perspective is that he doesn’t think that Josiah requires his type of surgery at this time (but he is, of course, waiting in the wings, in the event that his type of services are needed down the road). He showed us some of the computer images of Josiah’s MRI and Josiah seemed pretty interested in the information. Apparently Josiah has such unusual vascular structures that he had never seen anything like them before. He used some plumbing analagies to explain things in easier terms. He pointed to the sink on the wall and said that how the water normally got into the sink, through the wall it was hanging on isn’t at all how Josiah’s gets to his sink. In his case he said the pipes come from this side wall and run through the ceiling and then get to the sink. Then he used a toilet analagy to describe the outflow differences. He said that normally when you flush the toilet in your house it goes out from there, but in Josiah’s case when he flushes it basically goes out from the neighbor’s house, or even further down the block. I think Josiah (and definitely Michael, when I told him of this) appreciated the illustration.

He said basically “if it isn’t broke don’t fix it” in response to Josiah’s liver abnormalities, at least from the blood vessel standpoint. Pretty much all of Josiah’s liver function tests are in or very near the normal range. So, even though is structures are extremely atypical (go figure!) they are still working relatively well for him. However, the masses, or tumors, may be a different situation. That type of liver condition is beyond the scope of what he normally deals with. Because of that, we will be referred to a surgical associate who works closely with the liver people to likely have some type of biopsy procedure to determine the exact nature of the tumors, assuming that’s even possible to determine. Apparently there are “many” masses (the other doctor said at least five) in the liver of various sizes and tissue types. Also, based on the scanning imagry, and even based on the doctor’s touch, Josiah’s liver has a very strange structure. It looked almost “boomerang” shaped (my word). It is lacking a central portion and has practically an additional lobe on the underside that is basically a large tumor itself. This large mass is the one that it seems that to be of the greatest concern as it could be cancerous. Determining this will pend down the road, though it is likley we will be seen by the surgery doctors this week, most likely on Friday, so we should know more then…

Our final doctor was the Liver specialist himself. We covered some of the ground that had been gone over with the surgeon as well as a bit of new territory. He also endeavored to engage Josiah, but by then he was well into his Star Wars book and was fairly non-participatory (at least from a productive standpoint–sigh!). He was much more nuanced in his use of language to describe the liver “masses”. He preferred to use the word “nodules” and shy away from the word “tumor” since he felt that may imply cancer too strongly. There is a strong possibility that the masses are all of a benign nature, but it appears that the only way to know “for sure” is to biopsy them. I guess so far the imaging and the blood work are not as conclusive as we could have hoped. He discussed the very large mass and said that it had its own vasculature which could be indicative of cancer. At least some of the other “nodules” appeared to be “adenomas” (the same type of tumor tissue that the pituitary is thought to have)–and this was described (by the surgeon, I believe) as a “pre-cancerous” type of tissue. I think that means its usually benign, but it bears watching. It is possible that Josiah has some type of condition that produces adenomas in his body. But when I asked how we could identify this possible condition and hopefully “turn it off” both doctors said they didn’t know. I guess this will go on my list to ask the surgery doctors.

There was some discussion of endocrine issues, but this was separate from the pituitary concern and involved the intestinal area, but I guess I didn’t follow it entirely so can’t explain it to myself, or anybody else! I thought they were ordering up bloodwork, and we were in a rush to get Josiah’s NPO blood draw (that was supposed to occur between 8 and 10 am, I’d tried to do it on our way into the clinic but the lab didn’t open until 8:30 and our clinic appointment was at 8am) so I completely forgot to ask the questions that I’d pre-written down to discuss. Ultimately we raced out of the clinic to check in at blood draw at 10:10am but still had to wait an hour because they couldn’t read the doctor’s writing on the (apparently non-existant) blood draw for the liver clinic. So Josiah did finally get the last Endocrine blood draw, but it was an hour later than required. Hopefully that will still suffice, for we already had another unsuccessful lab attempt over the weekend, and I don’t know if the tumor decision is pending this particular blood draw information too.

We don’t actually know if we will be coming back to the Transplant Team or not yet. It really depends on what happens with the biopsies, which will hopefully be needle-stick outpatient procedures to sample a number of the “masses”. If it turns out that any of the tissue is cancerous, then we will probably be followed in the Oncology department. However, if the masses are benign, then we will likely be back to the Transplant Team, as they follow kids with the atypical liver blood vessels like Josiah has.

Well, I’m sure that is much more than enough for anyone to read about, so I’ll get this sent on its way. As always, please excuse my inadequacies here as I have no further ambition to re-read and attempt to correct any of the above.

Thanks again for all of your prayers and encouragement. We really appreciate how so many of you are holding us up. Blessings to all!


Addendum that I aluded to in my prior communication:
Several other pieces of info have been rattling about in my mind, and I hoped to share them with my dear readership and attempt to make sense of some thoughts, so here goes…

Missed Cancer Scare
Back when we first learned of the tumor, directly before Thanksgiving, we still were pending the results of the abdominal MRI/MRA scans. On Wednesday, the day after the tumor bomb fell, and the day before Thanksgiving, I was on the phone much of the day. I also managed to sneak in a bit of a nap time. So there were only two phone calls that I did not field directly then, and both times the answering machine picked up but no message was left.

About a week later I received the phone call fromt he GI doctor, who had ordered the original scans. She had been attempting to reach me before Thanksgiving but doesn’t leave messages. Apparently, had we spoken prior to the holiday, her report to me would have been much more unsettling than it was.

It seems that the original radiology report on the abdominal MRI indicated that they believed that Josiah’s liver was exhibiting cancer traits, and that they appeared to be some type of secondary, metastasizing cancer with the original cancer location unknown. Based on the blood work done by the neurosurgery doctors that cancer scenario may be somewhat less likely.

Tumor Treatment Insights
At the recent eye doctor visit we were able to converse with cancer survivor of four years. The woman had breast cancer that had metasticized to her lymphatic system and also had undergone radiation for a brain tumor (not a pituitary tumor). I inquired about her brain tumor radiation experience. She showed me a small scar on her forhead, probably between her eyebrow and hairline. She said that for radiation she had had a “halo” type of device screwed into her skull (at several points) and that the radiation was for many days and hours at a time. Her experience was 9-15 days, but not on weekends, and 9-15 hours per session. It was outpatient, but at those hours it was like living at the hospital. She also described a bit of her chemotherapy experience, but not in as much detail, since we were called back to the doctor’s appointment.

This info was somewhat helpful to me. I find it hard to prepare mentally/emotionally for the complete unknown. Since I’ve heard of the brain tumor treatment possibilities I really didn’t know what exactly to expect. Hearing this woman’s testimonial gave me a little frame of reference in preparing for what might be Josiah’s actual experiences in the tumor treatment arena. Of course, after our visit next week, we will hopefully know more specifically what exactly we are facing. I am thankful for this woman’s kind willingness to share her experiences with us. She was also highly complimentary of Josiah (and me) and seemed to consider Josiah’s challenges to far surpass her own. I found her humility and resilience to be inspiring, and hopefully Josiah was a bit encouraged as well (though he was more interested in the TV than her insights)…

Analyzing our medical (over)load (to the best of my imperfect recall!)
Here is the best listing of disciplines he has seen but have stopped, continues to see currently, and has had recently had added. Italics will represent medical doctors and regular font will indicate services, therapies, machines, etc. Several of his current disciplines see him every year or two, so even though we may have doubled the medical services, the volume and frequency is greatly increased, and fit into a very compressed time frame…
Former Services, but now discontinued
Neurosurgery/Plastic Surgery
General Pediatric Surgery
Physical Medicine & Rehabilitation
Consult Clinic
Endocrinology (the only Oakwood-based specialist)
Physical Therapy
Speech Therapy (both individual and group)
Occupational Therapy (group)
Music Therapy
School-based Tutoring
Adaptive Services Tutoring
Social Skills Group
Current and Ongoing Services
ENT (Otolaryngology)
Sleep Clinic (includes Neurology and Behavioral)
Cranio-Facial Clinic (multi-disciplinary team clinic)
Psychology (Therapy)
Occupational Therapy (individual, suspended until new therapist hired)
Respite Care-in home
Respite Care-center based
Tutoring-doctor’s office
Art Therapy
Blood Pressure Monitoring (twice daily)
Sleep Lab
Recently Added Services, in the last month or so
GI (Gastrointerology, may not continue)
Neurological Oncology
Endocrinology (U of M based)
Liver Transplant Team (Liver doctor and Liver Transplant Surgeon plus others, not sure if will continue)
Pediatric Surgery
Neurological Opthalmology (not sure if this will continue, depends on brain tumor treatment decision)
Growth Hormone Therapy (presumed to happen, and pending)
Pituitary Tumor Treatment TBD

The bottom line is that we just basically doubled the number and type of doctors he has to see regularly and so we are having to make some adjustments in processing all this information and attending multiple medical apppointments of late…

Post from Email #6   from this site:   http://www.carepages.com/carepages/JournalingForTheJazzman/updates/3344662

Historical Email #6

Posted Jul 11, 2012 4:55am

Sent: Fri, December 18, 2009 5:28:42 PM
Subject: Update #5 Re: Prayer Request for our son Josiah

Hello everyone. Hopefully this will be a briefer update than has been typical for me, of late…do I hear sighs of relief everywhere?

When I last wrote, two days ago, following the Liver Transplant Clinic visit we were anticipating coming back to the hospital today for the surgery clinic. However, prior to leaving the hospital on Tuesday, I checked back with the Liver Clinic to attempt to confirm the Surgery appointment and was told the desired doctor was in China and so an appointment was set for January 12th; and frankly I was releived to set the liver issues aside until after the New Year. However, the hospital called the next day to say that the Liver Doctor really wanted Josiah seen by Surgery this week so they were scheduling him for 8:40am on Friday…so much for the mental/emotional reprieve on the liver domain…

I had been having a sore throat all day on Tuesday and by the evening I had also developed a fever just shy of 102F. This meant I actually was in be by about 9:30pm (and any of you who may know of my sleeping habits know this means I felt really bad!). In fact that evening the three oldest family members preceeded the three youngest into slumberland–hmm. Wednesday I awoke with an extremely sore throat and a fever over 102. Fortunately I was able to sneek into a doctor’s appointment early in the day and get on antibiotics for my virulent case of Tonsillitis. I forced myself off of the sick bed to partake of some free Detriot Red Wings tickets made available by Josiah’s kindhearted doctor for a Thursday evening special event of our whole family, plus my father, Bill Stoddard, who had never seen a sporting event at the “Joe” (Joe Louis Arena). God is kind to have this little pick me ups in the midst of chaos.

We saw another Pediatric Surgeon than either of the ones we’d previously worked with or who had been specifically reccommneded by name by the Liver Doctors. He was very thorough in reviewing Josiah’s liver situation, even to the point of going to view the films directly in person, as well as consulting with the Radiologist, instead of just using the computer stored images. He seemed to want to slow the process down about Josiah’s liver, believing that the liver condition has likely been there for at least a number of years. He thought it best to have a full consultation with the other two named surgeons the Liver Team had mentioned as well as the Liver Transplant Surgeon we met with on Tuesday. Based on their discussions, and joint decision, we will likely have a surgery scheduled for after the New Year, but would know when exactly next week.

He was of the opionion that the surgery would be a Laparoscopic procedure (two small incisions, one for an imaging tool, and one for the surgical device) as opposed to the Needle Biopsy that the Liver Transplant doctors had suggested might be done. He was anticipating that if the Laparoscopic procedure was successful and uncomplicated by bleeding (or other) issues, then he would likely only keep Josiah overnight to ensure everything was alright and that no bleeders had been missed. If something went wrong, or if for some reason they felt the need to remove the larger mass/tumor, then we need to prepare for Josiah to be in the hospital as an inpatient for 1-2 weeks. He wanted to schedule things like an ICU bed to be available and adequate surgical suite time so that in the event of the larger procedure everything would be as prepared as possible.  [7/17 note, this implies that even the medical team can be in some degree of upheaval & flux when it relates to addressing Josiah’s needs–like us!]

He did not think that it would be possible to biopsy all of the known masses. He wasn’t even clear that they could/would biopsy all of the different tissue types of masses. I’m not clear what the steps will be if all tissue types are not directly examined but it seems that there will still be some type of work ups to attempt to “completely” rule out cancer. He wanted to have Josiah receive a Liver Ultrasound, and attempted to get him in there today but there was no availability.

So, next Monday we have the Neurosurgery appointment and will hopefully get to decide what the Brain Tumor treatment course is. I forgot to ask anyone specifically about how to line up the pending events,as in which should take priority, so hopefully will discuss this with the Neuro docs then. Also sometime next week we should get a call to schedule the Liver Biopsy. He also has an Art Therapy appointment next week, though that is usually relatively enjoyable for him.

After getting home today I returned a call to the Nephrology department. I am taking Josiah’s blood pressure twice a day and keeping it logged on sheets they’ve provided. Whenever a sheet is full (two weeks of data) I get it to their department for review. They are concerned about his ongoing high blood pressure that seems only minimally responsive to the medications. They want me to bump his dosage up again and to give him this extra dosage in the evening now. Also, they want to test for some type of possible condition by collecting his urine for 24 hours—BIG SIGH. Fortunately, and this may be the only time I can say this, the bedwetting thing is (for once) actually a bonus here! Since they can’t squeeze his urine out of his pull-ups I might not now get stuck with collecting pee for 24 hours! (I know my husband, and kids, think I never throw anything away, but believe me, even I have my limits here!!!) I suggested that they consider using a cateter when he comes in for the surgical procedure/biopsy (if the medicines used won’t interfere with the test) and make sure they collect it for 24 hours. They have to investigate if that is doable, want me to have the surgery people page them to confirm when we come in for the biopsy, and will perhaps put a note on his chart (my suggestion) to that effect too. I really don’t like things to hang on my overloaded memory.

Well, sorry that was much longer than intended but I’m still just keeping it real. By the way, unfortunatly his Respite Worker, who was doing wonderfully with Josiah, was let go, so we all have lost a crucial support at an inopportune time.

Please pray for God’s timing, and surgeon, for the upcoming Liver Procedure (and if the bigger procedure needs to take place to remove more tissue/masses) that God’s will would be done here. Also pray for this Monday’s Neuro team appointment that all issues will be on the table and that God will bring all concerns/questions to the forefront for discussion and of course that WE ALL MAKE THE BEST DECISIONS for Josiah in these arenas.

Thanks for taking the time to read and pray for our family. We really appreciate all of you out there helping to keep our burdens before the Throne of our Heavenly Father.

May God Bless each one of you richly in this Season of Light and Love and on into a Joyous New Year!


[7/17 These were from some comments I wrote in a “private” post to myself on one of the emails I’m not copying here…but wanted to include this insight now in reflecting back on 4 years since Josiah’s transplant…I wrote those remarks in August 2012]

“I’m also glad to note that I could interject some bits of humor in the midst of chaos! Even if no one else ends up reading any of these prior updates, they continue to be helpful to me.

God has definitely brought us through many trials and challenges, and he will continue to do so! Hopefully when it “all goes back in the box” (as Michael likes to say) there will be some form of “Well done my good and faithful servant”…at least now I do feel like I’m pretty much at that place of “doing the best I can with what I have to work with”…and my biggest lack of what to work with is within myself. Should I at some time consider medication for depression? Would this give me some degree of an energy boost, or just be a cop-out and “false fix” to much more complicated challenges, both internally and externally???”

Email #8 from this site:       http://www.carepages.com/carepages/JournalingForTheJazzman/updates/3344664

Historical Email #8

Posted Jul 11, 2012 4:57am

Date: Thursday, December 24, 2009, 7:00 AM

Joyful Christmas Eve to all!

Here’s an attempt at a slightly different format to mix things up a bit (rounding most events to the nearest 15 minutes).

Anatomy of a Surgery
A Mom’s Eye View

Wednesday December 23, 2009

6:30am Alarm goes off but neither Michael nor Valerie hear it–what a way to start!

7:00am About the time Val gets up and starts getting herself ready

7:30am Val gets Josiah up for Medicine & Shower, but forgets to take his BP

7:45am Time we are to check in to Laboratory to get some bloodwork ordered Monday

8:30am Time we were supposed to check into the Pre-Op area, after blood work

8:45am Time we actually check into Pre-Op without bloodwork done, get paperwork

9:00am Blood work is done but not all paperwork, back at Pre-Op

9:15am A young Mr. Burmeister checks with the Pre-Op area–he’s an old family friend!!!

9:30am Back to the Pre-Op holding room for all preliminary work ups

10:00am Detailed discussion with Physician’s Assistant on procedures; Consent Forms

10:30am Josiah taken back for Surgery; Supposed to have info in an hour

10:45am Check in with Child Life Specialist to get Surgery Doll, markers, and DVD

11:00am Phone calls to family

11:15am Eat lame snack breakfast in car in parking lot, take tonsillitis meds

11:30am Surgery Waiting Room check-in, issued pager

11:45am Get coffee, water, and begin decorating Surgery Doll

12:00pm Encounter Josiah’s Neuropsychologist in hall, give “Cliff Notes” brain & liver info

12:30pm Surgeon reports on surgery including complication, may stay 2 nights, not 1…

12:45pm Phone calls with update info to family

1:15pm Complete surgery doll, begin Journal entry

1:30pm Recovery room calls for me to come up, attempt last call to kids at home

1:45pm With Josiah in Recovery, more details on procedure, comfort measures, etc.

2:30pm Detailed discussion with surgical associate on procedure and com/implications

2:45pm Accompany Josiah to room on 6th floor, details discussed with Nurse on way

3:00pm Call family with updates; actually sit down for these 3 calls (Michael, parents, kids)

3:15pm Gather our belongings from car, transport to room using wheelchair

3:30pm Attend to Josiah’s needs on numerous fronts

4:00pm Encounter Child Life staff on 6 for DVDs and Arts projects

5:00pm Sit down again while taking Josiah’s food orders

6:00pm Finally get to phone in “lunch” and dinner orders; he hasn’t eaten since 11pm

7:00pm Food arrives at Josiah’s room

8:00pm Josiah and I finally eat “lunch”, and I actually get to sit down again

9:00pm Assisting Josiah with DVDs and Playstation video games bedside

9:30pm Various phone calls with family

10:00pm Multiple interactions with various staff

10: 30pm Val working on intake paperwork, 8 pages?, nurse wants by 11pm…makes it!

11:00pm Val commences “dinner” with salad, Josiah has some minor snacks

12:00am Begin laundering of Josiah’s outfit and coat

12:15am Val gets minor computer work done

12:30am Val finally gets to eat the last component of her “dinner”

1:00am Josiah’s ready for some of his dinner, including his remaining French Fries

1:15am Val heats Fries in an Institutional microwave, smoke fills room, scents halls!

1:30am First dryer check; half of items are dry, so fold and put “away”

2:00am Val finally sits down to work on Christmas Stocking glitter glue project for Josiah

3:00am Attending to Josiah’s further snack and entertainment needs

4:00am Josiah is finally about to settle down and sleep!!!

4:30am Second dryer check, folds and puts away remainder of laundry

5:00am Encounters father & son in TV area; talks sports & hospitalization encouragement

5:15am Works on creating this running, highly incomplete, activity inventory

6:00am Christian supportive commentary with night nurse, Val gets/gives a hug!

6:15am Debating bathroom break, don’t want to miss doctors doing rounds…why sleep!

6:30am Commencing the sending of this email account

Hope you all enjoyed the break from my usual format…I’m still planning to do the more detailed account, probably shortly I’ll begin on it. Josiah’s sleeping quietly, I’m relatively awake, I have computer access, it’s Christmas Eve Day!

Love and Blessings to all,

Hope you are each enjoying a Joyful Celebration of Light actively overcoming darkness!


Email #9, Part 1 from this site:     http://www.carepages.com/carepages/JournalingForTheJazzman/updates/3344665

Historical Email #9, part I

Posted Jul 11, 2012 4:59am

Date: Wednesday, January 6, 2010, 7:55 PM

Well I hope you guys enjoyed my attempt at a journalistic-style somewhat play-by-play of many of the events of Josiah’s current hospitalization. I don’t know how people do such an accounting with any great accuracy. I kept looking to the clock and trying to make mental notes of exactly when specific events occurred, but things quickly blur into white noise…

Josiah had Art Therapy scheduled for Tuesday afternoon at 2:30pm. We were practically running late so I called the therapist’s voice mail to let her know we were coming. Something else added to our delay so I was just about to head out the door when the OR staff called to discuss Josiah’s surgery for the following day. The caller was new to doing this procedure so everything was “by the book” and took quite a while. By the time we finally got to Art Tx we were nearly 1/2 hour late.

Josiah was to be NPO (Nothing Passed Orally) by Midnight with only clear liquids until 6:30am. I was supposed to dose him with all of his morning meds and he would be allowed sips of water to take them. We were supposed to get the Bloodwork ordered up on Monday (I was to be carrying the sheet with me)–Cortisol per the Brain Tumor Doc and AFP (Alpha Feto Protein) per the Surgeon for Wednesday’s procedure. I had hoped they could do this blood draw bedside in the Pre-Op area. We were to arrive for Surgery Check In at 8:30am, but to do the bloodwork we now were to be on the 3rd floor lab (as the 2nd floor doesn’t open up until 8:30am) about 7:45am. Needless-to-say I was disappointed to have such an early arrival for we would need to be leaving around 7am–Oh Well…

As my #7 Update mentioned, both Michael and I slept right through the alarm so I was actually getting out of bed about the time we should have been leaving for the hospital. We weren’t too late for the Surgery Check-In, but since we still had the bloodwork to do we may have been delayed in heading back to the Pre-Op area. Since there is Surgery paperwork to do upon check-in I was able to get the bulk of it done while waiting in the Lab for Josiah’s blood draw. I don’t think ultimately that our later than planned/scheduled arrival ultimately threw off the surgical component of the day too much, if at all.

One interesting Bonus of these time permutations was that I was literally standing next to the Surgery Check-In desk completing the final aspects of the Paperwork when a young man stepped up appearing to Check-in. He gave the last name of Burmeister then discovered they were in the wrong area, even on the wrong floor. As he prepared to leave I asked “Jacob Burmeister?” and he looked at me rather astonished and said “yes!” I re-introduced myself to him by my maiden name and we gave each other a big hug. I haven’t seen him in nearly 30 years and we were probably entirely unrecognizable to each other by appearance (big sigh on my part!). We used to spend two weekends a year on his family’s farm helping to bring hay in during the summer and firewood in in the fall. There were several families and I was the oldest of all the children. I even was privileged (as the oldest of the extended brood) to spend a couple different weeks at the farm over a couple summers. I mentioned these facts to the Surgery Check-in ladies who had been watching us with their mouths practically hanging open. Jacob introduced his two young sons and I introduced Josiah. One of his son’s was going to a post-op visit at ENT following having had a cyst removed from his neck–I forgot to ask which doctor. It still was a bit of a pick-me-up to see a friend from my childhood at an “accidental” encounter–hmm, God is good!

So we did not end up waiting at all at the check-in site but headed right down to the pre-op holding area. This is not the place he used to go for pre-op and I’m not exactly clear if that is due to his increased age or changing hospital policies. I had been there with Josiah prior to the “fateful” MRIs and at least a couple more recent surgeries. Nathaniel and I were there twice too for his broken arm surgeries.

The Pre-Op phase seems pretty routine, now that I’ve personally been there at least 18 times, between my three sons (counting surgeries only, not sedated procedures). Nurses check vitals, start IVs, get hospital gowns, (and often go over detailed medical history, although that aspect didn’t happen today, therefore no new “degrees” were handed out) etc. Usually someone from the particular surgical department meets with me to discuss exactly what they will be doing on the child on that particular day. Often time they also go over a visual diagram to confirm exactly where the procedure will occur in the body, so that we all can sign off in agreement as to the correct location(s)/procedure(s)–although this did not occur this time either.

For some reason, I hadn’t already had to sign the surgical consent forms…possibly because this event was set up so quickly? This time a Physician’s Assistant from the Pediatric Surgery department went over everything in quite thorough detail with me before anything was signed. We had some discussion of how many different types of tissue were represented in the masses/nodules and if all of them would be biopsied, if possible. He was quite clear that their approach would be to biopsy as many of the tissue types as they could safely do. We talked about what might happen if all the clearly different tissue types didn’t end up being biopsied. In that event, it is possible that further imaging studies could be done; further surgical procedures (likely “opening him up” and cutting out some of the masses); or even various cancer treatments like chemotherapy or radiation. Future events will pend, at least initially, on the biopsy info.

He explained the Laparoscopic type of procedure that was planned for Josiah. They would be making the larger incision, less than an inch, through the belly-button area. There would also be a medium incision down lower on his right side, maybe 1/2 inch. Finally there would be several smaller puncture wound sites from where the needles were used to get the tissue samples. In the event there was uncontrolled bleeding or an obvious need to remove a mass they would then open him up with an incision that would likely follow the ribcage, about an inch below the ribs, and along much of his right side. If that more complicated procedure occured, then he could be in the hospital for 7 to 14 days. If everything went well then he would be in just overnight.

The above info was written sometime during Josiah’s hospitalization, while bedside. What I will add below is being composed at the Dearborn Christian School office computer while Brandon and Clarissa enjoy a church-provided (Dearborn Christian Fellowship) pancake dinner, and I attempt to catch up on computer chores…

A very friendly lady from, I believe, the Child Life department came by to offer Josiah the chance to choose a DVD to watch. She inquired as to his interests then came back a few minutes later to bring some movie choices. He ultimately selected a Spiderman movie which he was able to watch on the small portable DVD player. He watched this throughout his remaining pre-op phase and was only distracted from it by the IV vein search conducted by one of the staff. When they took Josiah back to surgery, I collected the DVD in its case and asked the lady who’d provided it if it would be ok for me to hold on to it so Josiah could watch it in his room since he would definitely be staying inpatient following this surgery.

After they took Josiah to surgery I stopped by a couple of nearby hospital areas to see if it would be possible to scare up a “surgery doll”. In the past, for a number of the kids’ surgeries I’ve decorated these toys to commemorate the event. Ultimately another Child Life worker found the dolls in storage and let me choose one for Josiah, and some pens to decorate it with.

From there I was to head to the Surgery Waiting Room, and they usually send a staff person to accompany you there. I said I was quite familiar with where I needed to go so was allowed to “fly solo”–being a bit of a veteran and all. I stopped by the pay phones at Surgery Check-In and called Michael, my parents, and my kids and gave them the current status on Josiah. The line was fuzzy on the other end so the conversations were rather short and loud. Then I stepped out into the parking lot to eat what pretended to be some sort of breakfast, but was really old rather stale sandwich crackers–yuck!

Finally arriving at the Surgery Waiting Area I checked in with staff and was issued a pager. I collected some complimentary drinks (coffee concoction and water) then set to work on various items I’d brought along to keep occupied. Most of my early efforts were toward decorating the surgery doll, and I was able to complete this prior to being called back to the Recovery Room. I made a beginning of writing in a Brain Surgery Journal that I’d brought along, but didn’t get very far before it was time to leave. One brief highlight was seeing Josiah’s Neuropsychologist on his way to the Craniofacial Clinic (Josiah sees him there too) and it was nice to see a familiar and compassionate face. I quickly brought him up to relative speed on the Liver and Brain Tumor situation and he seemed pretty aghast that Josiah (and perhaps I) was facing such difficult medical/emotional obstacles.

When it was time to get the Surgery Report, from the Surgeon, I only spoke with him over the phone. I believe this is the only time in now 18 surgeries that I did not receive a face-to-face report, so if felt a little strange. He indicated that they had gotten quite a few tissue samles, around a dozen I believe, and they all looked to be from the masses and not the normal liver tissue. He also mentioned some type of complication that may mean that Josiah would end up being hospitalized for two nights now, instead of one. Following this I made further calls to Michael and my parents, but couldn’t get through to the kids at home (they later told me they’d picked up the call but I never heard that at the hospital).

When it was time to go to recovery one of the Waiting Area staff accompanied me back up to the third floor, even though I offered to go alone being quite familiar with the way; it’s just adjascent to the pre-op holding area. Josiah was rather groggy and quite uncomfortable. I helped him with sipping apple juice and water and discussed his situation, in particular pain management with the nurse. It took a while for him to settle down and get more comfortable and ultimately some opiates assisted in that process (morphine).

From a couple private posts to myself on that page this insight from 2012 & 2015:

Posted Jul 15, 2015 9:44pm

Private message

Wednesday July 15, 2015 still at FAC

Thinking back on that day, and not specifically what’s written here but the previous Cliff Notes version [that’s what I need to communicate with my family, a Cliff Notes writer in my head!!!!] I was wondering if that family in the waiting area was at all helped by interacting with me, a veteran of U of M hospital stays and surgeries, etc. Could my ease in the environment help to set them at ease?

In some way now I’m finding myself blurring out and reading this all with a level of detachment–kind of like all of this happened to someone other than me. Perhaps that’s how I actually live my real life?


Posted Aug 18, 2012 3:43am

Private message

August 18, 2012 3:40am

Just making my way through some of these past adventures…prepping for the one that’s on deck. It’s not that easy seeing what we went through, but it was survivable then, and will (likely) continue to be so this time too…No matter what ends up happening, we’ll never be apart from the Lord…and that’s all the guarantee we ultimately get/need!


From Email #9 Part 2 from this site:   http://www.carepages.com/carepages/JournalingForTheJazzman/updates/3344666

Historical Email #9, part II

Posted Jul 11, 2012 5:01am

…opiates in that process (morphine).

Prior to being transferred up to the 6th floor patient room one of the surgical associates came to speak with me. We talked as some length about what exactly had happened during the procedure and what some of the future steps would be. The Surgical Complication that occured was called a Pneumothorax (a partially collapsed lung). During one of the needle sticks to get some tissue to biopsy the instrument pierced his diaphragm and caused some air to seep into his chest cavity. This registered when his oxegenation began to drop. They called in an X-ray and discovered the partially collapsed lung, about an inch of air gap is what I recall. Anyway, this ultimately resulted in them placing a chest tube between his ribs and attaching him to suction to attempt to remove all of the encroaching air outside of the lungs. It also meant that we were to anticipate spendning two nights in the hospital instead of one…presumably going home on Christmas Day now.

Also we discussed what would possibly happen if the biopsies did not sample all of the different tissue types of the masses. Apparently if there were unbiopsied tissue types it could be possible that Josiah would have to go to the Oncology (Cancer) service and undergo cancer treatments as a precaution. Ultimately he will be followed for the Liver issues by either the Pediatric Liver Transplant Team (some of whom we’ve already met) or the Pediatric Liver Cancer Team. That determination will ultimately be made some time down the road.

The other thing that we discussed was his actual Liver condition. Apparently he has an extremely rare condition, possibly One in a Million–Literally…but I don’t now recall it’s exact name. Part of what he has is called CAPV (Congenital Absence of the Portal Vein), but I don’t think that’s the extremely rare part, though that too is quite rare. What is rare is the way his liver works that ultimately results in the creation of the many nodules that have been observed. This condiition is so rare that, according to the surgical associate, many specialists could go their entire career and never see such a case….Wow!

Well, in the actual present my kids, B & C, are clamoring for me to hurry up and finish my computer work so I will really abbreviate the following comments…after all, those of you who read the Update #7 were “treated” to the fairly around the clock version of the first day.

Josiah was moved to his sixth floor room and I spent a lot of time discussing his situation with various staff and attending to his many needs. Ultimately we were able to secure a free-standing TV screen hooked up to a PlayStation2 Video Game machine so Josiah was able to watch DVDs and play videos bedside. This acquisition went a Long Way to making his hospitalization much more pleasant from his perspective, and more convenient from mine (as it freed up the bedside computer monitor for my periodic use).

Unfortunately I missed the surgery team when they did their rounds in the evening. I walked into the room just as they were leaving, and this was a big disappointment to me, for I would have loved to have heard their initial discussion, and thrown in some of my own questions too–Oh Well! Later when one of the associate young doctors (a Resident?) came in to check on Josiah I asked if his unusual condition was making his care more interesting, causing their discussions to be more atypical. He indicated that such a rare condition was actually rather scary for the staff, since they were pretty much in the realm of the unknown (he used the word “scary” but the rest is my paraphrase). He said they were really working hard to ensure that every needed specialist was called upon for input to make sure they got everything right. It did seem, in retrospect, that he was visited by actualy doctors more often than has been typical in his previous hospitalizations, but that may just be my imagination.

One of the hitches that ended up being problematic was the staff not attending to his usual medication needs in their entirety. He did not end up getting his morning meds until later in the afternoon and he ended up getting pretty agitated before I actually figured out the problem. I was not supposed to bring any of his meds from home and they were supposed to supply everything he needed but it still took my follow-up to ensure that actually happened ultimately. One thing I try to do is read the nursing charts (at least I did this pretty regularly in the NICU days and during some of the previous hospitalizations) but I never got to that task during this particular stay. Perhaps if I’d made a point to do so I would have caught the fact that his usual meds hadn’t been given and Josiah, and those around him, could have been spared some discomfort (his behavioral issues became magnified without the typical meds).

Another challenge that was unique to this hospitalization was the toileting need. I won’t go into details here, since it’s such a personal topic. However, suffice it to say that as long as Josiah was attached to the wall suction, which he was for most of his stay, he couldn’t get up to use the bathroom. He did require nursing assistance during these times and displayed an amazing level of comfort with a process that would have embarassed and humiliated virtually every other family member had any of us had to have been in such an awkward situation!

I ultimately never did get any sleep while he was in the hospital, though I did make some effort after the physicians did their morning rounds, on Chirstmas Eve Day. The “pneumothorax” seemed to be resolving relatively well so the suction was removed and a series of X-rays were ordered to check on the lung status. Ultimately late in the afternoon or early in the evening Josiah was given clearance to go home. It took us a while to ultimately leave and I ended up making two trips to the car–the first with a wheelchair full of our paraphenalia, but we ultimately left the hospital sometime around 8pm. Since I was so sleepy I drove relatively slowly, also since the roads were a bit slick, but we did get home in time to collapse on Christmas Eve.

It was a rather strange Christmas Break. Josiah experienced a decent amount of pain and ended up using up his entire stock of pain pills. I went into some type of hibernation phase and just did an awful lot of sleeping over the break. Michael was able to get the week off and he did a lot of various things with the kids. We were thankful that Josiah (and I) were able to be home for Christmas, but it’s not the type of Christmas one hopes to repeat!

As to where we are going from here some of that really remains to be seen. The surgeon did come in and share the good news that the biopsy results (preliminary or final I don’t know?) were available and there was no cancer. Since tissue from the large mass/tumor and tissue from the smaller masses was “the same” this seemed to reinforce the theory of the new and extremely rare diagnosis (when I actually see the info in writing then I’ll share those details with you all, dear readers/prayer warriors) so that was “good news” too.

Currently Josiah has an appointment scheduled with the Surgery Clinic for post-op follow-up but they will not be following him except as needed if further surgical procedures are warrented. We do not yet have an actual Liver follow-up appointment, so that is pending.

On the Brain Tumor front I was hoping to hear from Neurosurgery, since the Neurosurgeon was unavailable for the 12-21-09 appointment. The Brain Tumor doctor, who was there, implied that the “through the nose” brain tumor surgery would be scheduled quite soon, likely in January or possibly into February. I haven’t heard anything on any of these fronts yet so placed a couple of calls today to see where things stand. I’m waiting from a call back from the Neurosurgery office and/or the Nurse Practitioner who is assigned to facilitate our interactions with Neurosurgery. So hopefully by this week or next we’ll have a better idea of what we may be facing down the road.

This coming Monday, January 11th, Josiah and I will be at the hospital all day for blood work related to the Growth Hormone Deficiency. Later that afternoon we are also to see someone from the Nephrology department regarding his high blood pressure. The HBP hasn’t been doing that well of late either, at least to my perspective. I just sent them the latest two week documentation of BPs from the local doctor’s office yesterday. Obviously there are still quite a few things actively going on with Josiah so we greatly appreciate all of your prayers on his, and our family’s behalf.

I trust each of you enjoyed of Beautiful Christmas Season and are continuing to experience a Blessed New Year. God is able to keep and sustain each of us though our various trials and to temper our pride during those times when we appear to triumph too.

May He Light your path and grant you Grace and Peace!


And here are some more Private Posts from that site:
Posted Jul 15, 2015 9:57pm

Private message

Wednesday July 15, 2015 still at FAC

Remembering the fact of being in the hospital at Christmas time, going home on Christmas Eve, I remember being disappointed and even a bit angry that Josiah would not be able to receive one of the Christmas presents that had been prepared for the patients…if memory serves they would only be given out to people on Christmas Day…I really had hoped he could have that bit of a special experience as that particular Christmas season was really out of whack for me. I was such a mess and barely did Anything real for Christmas. Nathaniel was so great in the humor factor given the horrible presents we/I distributed!

The “scary” comment admitted by one of Josiah’s caregivers makes me wonder if at any level that has been the experience of educational and/or therapeutic staff as they work on his myriad needs?

I had completely forgotten about Josiah and peeing bedside with nurse assistance. I’m almost getting tears in my eyes thinking about how nonchalant he was about the whole thing, really taking it in stride and having almost no embarrassment about it all. He’s quite an amazing guy!


[Note: Today, July 30, 2017 with Josiah healing from his most recent surgery & dealing with a Urinary Catheter this comment is most poignant.  He has shown amazing resilience & comfort with being a patient, including with toileting, which has been a significant part of this current surgical & recovery process.  I’m so thankful (for him) that he seems comfortable being assisted in these areas when necessary, since this kind of nakedness before another can be incredibly distressing to most of us!]

Posted Aug 18, 2012 3:54am

Private message

August 18, 2012 3:50am

It’s not easy to read all of this, and for the most part I tried not to let the narrative spark my specific memory of events. I’m glad to see that my writing tone is mostly factual and not whiny. I wonder if anyone actually reads this kind of stuff in its entirety what they think of what we have faced or how we have faced it? It’s really hard to have any sort of perspective here because it’s the only life I now know…is there any such thing as normal???


Email #10 Part 1 from this site:   http://www.carepages.com/carepages/JournalingForTheJazzman/updates/3344667

Historical Email #10, part I

Posted Jul 11, 2012 5:03am

Date: Monday, January 25, 2010, 6:12 PM

Well everybody, I’ve been having some challenges getting computer time so it’s been a while. And that is all I wrote last week…so here’s another try…

Good news! Josiah’s liver appears to be relatively stable, and not cancerous (that they can tell) so he will be seeing the Liver specialist on a relatively normal rotational schedule from now on. This means he should be seen by the doctor on an annual basis along with getting a liver ultrasound and will have his liver functioning tested via blood work every six months. Also, at this time he will NOT have to be going to the Liver Transplant Clinic! He will be followed by the doctor from that clinic, but as a GI/Liver patient for the time being. That’s a psychological relief as it makes the potential for liver surgery seem at least a bit more removed now!

[I snipped the rest of the email to just focus on Transplant issues…]

[7/17 Present Day, 4 Years Post Liver Transplant, these above comments represent the brief period of respite on the Liver front, before we came to understand that Josiah would actually need a Transplant–ignorance is bliss???]

Email #11 from this site:   http://www.carepages.com/carepages/JournalingForTheJazzman/updates/3344669

Historical Email #11

Posted Jul 11, 2012 5:05am

Date: Wednesday, February 10, 2010, 5:26 PM

Just briefly…sighs of relief all around!

Josiah just had his CAT Scan of the head today and everything apparently went well. We should, presumably, get the results of this next Tuesday at the Neurosurgery visit. We also will hopefully then be able to nail down Brain Surgery, including what procedure is anticipated and when…I’ll try to let you all know following that appointment if possible.

We are holding off on making further medication changes for his High Blood Pressure pending the Brain Surgery. He’s been taking a slightly lower dose of the already prescribed medicine and seems to be holding his own in that arena pretty well.

We received an appointment letter for the GI Liver Doctor for next month. Hopefully at that time we will get more complete information, and perhaps something in writing(!), about what exactly is going on liver-wise. I forgot to mention to you all that when we spoke with the Pediatric Surgeon who performed the Liver Biopsy at the Post-Op visit he mentioned the need to address the “Encephalopathy” (malformed/atypical brain issues). Since no one has really addressed this topic with us, except in passing, I hope the GI Liver doctor will be able to shed some light on this topic. These brain issues are apparently associated with his Liver Condition (Congenital Absence of the Portal Vein).

I’ve been attempting some journal research into the CAPV topic, via Google Scholar, and was able to print off a couple of articles here at the U of M Women’s Resource Center, where I am currently writing from. A number of articles I cannot yet access, but have seen the abstracts for, have raised some intriguing questions about the CAPV condition and how it might be related to some of Josiah’s other Congenital (Birth Defect) concerns. In particular there is a pretty strong association between CAPV and Cardiac defects. There was also at least one mention of Spleen connections which reminded me of how the doctors used to be able to “palpate his spleen tip”–which I guess wasn’t something they should normally be able to do. I hope to further access some of the medical literature and see if it raises any issues/questions that I could then address to the appropriate specialist/s as I seem to be the only one carrying The Big Picture within when it comes to the total package that is Josiah…

Email #14  from this site:   http://www.carepages.com/carepages/JournalingForTheJazzman/updates/3344672

[7/17 note: I’m including a paragraph here that juxtaposes managing medical needs for Nathaniel (experiencing his third surgery to repair a displaced forearm break, 1st surgery to put a plate on one bone, 2nd one to plate another bone that had shifted after a classmate grabbed a textbook out of his hand, & this 3rd & final procedure to remove both plates to avoid nerve or tendon damage?) and Josiah…By the way, as all those crazy things were happening medically for Josiah I still had 3 other kids & a husband who needed some degree of attention, & it was very difficult to strike the “correct” balance (not remotely implying that I achieved that Ever!)…]

Historical Email #14

Posted Jul 11, 2012 5:08am

Date: Thursday, March 18, 2010, 2:03 PM

Hello again everyone. Here’s what’s been happening lately in our universe…

Friday afternoon I was able to make a number of business calls that ultimately resulted in some appointments this week. Nathaniel (my oldest child, 16) was to have orthopedic surgery on Tuesday to remove two metal plates from his left arm–used to heal a pretty nasty break of about 2 years ago. Also, Josiah was to see Genetics today, which is why I am able to write to you all now.

Regarding Nathaniel, surgery went very well. We ended up spending about 8 1/2 hours at the hospital in total, so it was a very long day. Frankly, however, doing surgery with Nathaniel is a real “joy” and a breeze–at least compared to how things go with Josiah! In the pre-op paperwork there were only a couple of “systems” that required info, whereas for Josiah all but one or two systems usually require varying degrees of explanation. Also, on the behavioral front, there is just no comparison as to how “easy” things are with Nathaniel. I’m guessing that the experiences I’ve had medically (he had a doctor’s appointment last week) and surgically with Nathaniel are what “regular” parents with “regular” kids usually experience. When managing these types of visits with Josiah the stress factor is WAY UP by comparison. That is probably due to a combination of the extremely complicated medical issues that I need to be aware of and conversant about and the necessity of managing a LOT of behavioral issues too. It’s rather sad, but compared to how things usually go with Josiah, jumping through these hoops with Nathaniel was “fun”!


Email #16 from this site:   http://www.carepages.com/carepages/JournalingForTheJazzman/updates/3344674

Historical Email #16

Posted Jul 11, 2012 5:10am

Date: Monday, May 17, 2010, 2:41 AM

I recently got a letter in the mail from the GI doctor regarding some recent lab-work. It said, in part “Labs mildly elevated from last…if there are any perceived changes in behavior, please contact office”…Needless to say, this is somewhat troubling. I’ve called them a couple of times to get some type of clarification about what’s going on but haven’t had direct contact with either a doctor or nurse so this cryptic message remains rather elusive. I’m wondering if what is elevated is “ammonia”–which is apparently associated with the “encephalopathy” concerns? Also, I really don’t know what type of behavior changes we need to be looking out for. During the IEP recently the school staff noted that he had been exceedingly happy and boisterous lately, unusually so, but we haven’t seen similar behavior at home…hmm???

Email #17 from this site:  http://www.carepages.com/carepages/JournalingForTheJazzman/updates/3344675

I’m choosing to include this snippet because it deals with Encephalapathy & behavioral issues that were potentially linked to his liver condition.  It also contains details about other concurrent issues we were dealing with for Josiah, since the Liver Transplant issues didn’t happen in  a medical vacuum…

Historical Email #17

Posted Jul 11, 2012 5:11am

Sent: Tue, June 8, 2010 5:49:56 PM
Subject: BRAIN SURGERY PENDING–Update #16 Re: Prayer Request for our son Josiah

Hello again everybody. Here is the latest on Josiah’s continuing medical saga.

Also on that same day before surgery we are scheduled to see the Sleep Team Behavioral Pediatrician. We only saw her a while back but she wanted Josiah to be more compliant with his usage of his new CPAP machine settings and to see what, if any, impact that may be having on his behavioral, and bedwetting, issues. Since he will not be allowed to use CPAP following the through-the-nose surgery, since the surgeon “doesn’t want air forced up into his skull”, it is likely that some of these discussions will ultimately be moot. Also, if he’s not allowed to use the CPAP for an extended period of time I would guess that we also will NOT end up doing the bedwetting intervention this summer. At least that may give him another year to see if he finally outgrows this problem…sigh…

Since we were discussing behavioral issues at this appointment we took the time to outline as best as possible any behavioral changes he has been experiencing lately. I believe I mentioned in a prior update that his blood levels of Ammonia had risen (fairly significantly?) from the 70s to 100. If they go over 100 then some type of treatment is in order, per the GI doctor. The Behavioralist and I discussed what exactly has been happening behaviorally with Josiah and the recent IEP paperwork was quite helpful here. Josiah’s homeroom teacher/casemanager had kindly included some recent comments by several teachers that described various types of behavioral changes/concerns they had in their individual classes. This “objective” data was helpful to me, as it’s very hard to describe what may in fact be “subjective” changes that are perceived in the home setting.

Fortunately I had documented the exact days that the Clonidine patch(es) was placed so that info confirmed that some of the sleepiness Josiah had been experiencing at school Pre-dated this medication (which is also associated with increased drowsiness). The Behavioral Pediatrician took detailed notes and wrote some type of inter-office memo to the GI people with these behavioral findings so that I do not need to exactly repeat it all to that other medical group (hopefully–since I haven’t heard anything from GI I guess this bears some degree of followup eventually). Also, I did forget to request further Neuropsych Testing, which the Behavioralist is often willing to order. With all the changes happening for Josiah this may be quite instructive of his mental/emotional/neurological functional level. Hopefully I’ll remember to request this at next week’s meeting…

Email #18 Part 2  from this site:   http://www.carepages.com/carepages/JournalingForTheJazzman/updates/3344677

I’m just including the Post Script here because it speaks to me of the spiritual journey & it may encourage someone who might ever come to Today’s blog post…

Historical Email #18, part II

Posted Jul 11, 2012 5:14am

PS. I am reading a rather delightful book (for Narnia fans) called The World According to Narnia: Christian Meaning in C. S. Lewis’s Beloved Chronicles by Jonathan Rogers (from the Dearborn Library for any interested parties). Some of what I’ve read today seems rather applicable to our recent events, so I will quote below (beginning on page 81)…

Puddleglum’s outward pessimism conceals a deep and abiding faith in Aslan [the Christ character in the Narnia books–Val’s note] that gives him an unshakeable steadiness. What at first looks like defeatism is in fact a peculiar kind of contentment. He is always ready to receive whatever life (which is to say, whatever Aslan) sends his way; being always prepared for the worst means his life is, for the most part, a series of pleasant surprises…He never assumes that he has a right to be happy. He never feels he deserves better than what he’s getting. Imagine a life free from disappointment. There is genuine freedom in such an outlook…

Puddleglum understands the value of suffering. Therefore he doesn’t try very hard to avoid it; at any rate, he doesn’t let the desire for comfort keep him from doing his duty…Eustace and Jill can look forward to the adventures ahead if they want to. Puddleglum looks forward to the hardship. For it is hardship, not ease, that steadies a chap….

Puddleglum, however, is the only one of the group who is able to see beyond appearances…

The thought of better times ahead doesn’t cheer Eustace and Jill, however; it only increases their dissatisfaction with their current hardships. It’s the exact opposite fo the gloomy satisfaction Puddleglum derives from the belief that bad times always await him; for Puddleglum, his present circumstances are never as bad as they might be, and he finds a genuine contentment in that realization…

Whatever appearances may be, however impossible Aslan’s claims may seem, the Lion is ever faithful and ever true. The task of the believer is first to trust and obey. Understanding will come later, or maybe not at all. The success of the mission will depend not on the travelers’ strength or wit, but on theier ability to trust the Lion, who is utterly trustworthy.”

Not that I have arrived at these perspectives, but I am inspired, and challenged by this fictional, faithful character, Puddleglum the Marshwiggle, of C. S. Lewis’ The Silver Chair…May we all seek to follow the Lion more closely and along with Job be willing to accept “evil”/suffering as well as good from His hand!

I’m sending this “as is” so forgive the errors/misquotes…they are obviously all mine!

Email #19 Part 1 from this site:   http://www.carepages.com/carepages/JournalingForTheJazzman/updates/3344678


Historical Email #19, part I

Posted Jul 11, 2012 5:16am

Date: Wednesday, October 27, 2010, 8:31 PM

Hey everyone,

Some “fans” have inquired about the latest thnigs going on with Josiah, so I thought I’d attempt another “update” to let you all know the most recent developments.

We just saw the Liver Doctor “last week” (that time frame was true when I originally drafted this). They did more blood work on Josiah then, but I do not have those results yet (actually I recieved a copy and they said things were “normal”, although I did note that the Ammonia level was again “pretty elevated”, even though the doctor didn’t call attention to that fact). However, we did have a pretty frank discussion regarding what’s going on in the liver domain (Josiah was basically napping on the exam table so didn’t really hear much of this). As far as we know, Josiah’s liver is “abnormal” only inasmuch as the blood vessels surrounding/leading to it are extremely abnormal. The liver “abnormalities” are some type of functional compensation by that organ in order to be able to acheive a relatively normal funtioning (based on past blood work). In the event that the liver function becomes depleted it is extremely unlikely that Josiah would be a candidate for a liver transplant (his extremely atypical blood vessels in this arena making a sucessful transplant virtually impossible)…so in the event his liver becomes “problematic” in its function then we may be looking at some type of significant life-shortening scenario. However, at this point, with the very atypical liver functioning in a relatively “normal” pattern there is no anticipation of early death. They will continue to monitor his liver bloodwork about every three months, check his Ammonia levels every six months (this has been elevated in the past and could be an indicator of Encephalopathy, a condition he probably does Not have–it tends to be associated with very diseased livers, like those with cirrhosis–but they still need to monitor this), and be seen in clinic every year.

We were also here at U of M “today” for another Urology visit, but they didn’t have us listed on their schedule. After much computer tracking down it seems that I somehow wrote down the exact day and time for the Urology visit from 2009 into my 2010 Planner! The investigative staff person assisting us with the “Check-In” was kind enough to suggest that as a mom I’m allowed at least “one mistake a month”. I jokingly told her that I still had a long way to go to catch up with that standard (a darn ambiguous statement, hmm)! In the nearly 15 years we’ve been coming out to Ann Arbor for literally hundreds of appointments (taking into consideration the years when I had to bring him here three days per week for 2-3 appointments/day)…my handful of “mistakes” are not too bad–I think.

By the way, one tax year, way back, when I was attempting to calculate our medical expenses for deductions. I was adding up transportation costs based on my calendar and discovered that for the family there had been 300 medical Destinations (probably less than 10 of which were Michael’s) and many of them involved 2 or 3 separate appointments. I think retrospectively that that year may have been the pinacle of the medical “insanity” that Josiah brought to our family. I’m pretty sure that was back when I had four pre-schoolers and had to haul them all (almost always alone) to all these appointments. That was probably the year that we encountered our worst-case appointment scenario where we had to wait more than four hours for a scheduled appointment (and this happened shortly after hospital accredidation busybodies had decided that waiting room toys might pass germs, so the usual distracting activities were unavailable…believe me by the time we were heading home, the kids weren’t the only ones who wanted to scream the whole way home!

Thankfully God mercied us all and we have survived (and occationally thrived) through all of this chaos!

Here some other things that have been going on for the family:

Michael’s Christian Rock Band, Binding Faith, “broke up”…which has been a loss to us all. However, he has become involved in a number of praise and worship related bands. Recently one of his bands played for a local Celebrate Recovery event. Most of the family attended this, and it was such a treat to see him on his bass again! That band also was involved in playing music for a “revival” at a local church and was much appreciated!

Email #20 Part 1 from this site:   http://www.carepages.com/carepages/JournalingForTheJazzman/updates/3344680

7/17 I just had to include this snippet since it dealt with the Christmas Pee situation…given all the pee components to Josiah’s present catheter situation…

Historical Email #20, part I

Posted Jul 11, 2012 5:19am

Date: Friday, January 7, 2011, 3:56 PM

Merry Christmas Season, Dear Readers…

Here’s the latest on the continuing saga that is Josiah’s life…

Since the last Update:

We are once again ensconced at computers at U of M’s Mott Children’s Hospital Family Resource Center on the eighth floor of said facility. It is a beautiful, cold, partly cloudy Michigan Fall (technically since Winter isn’t official until 12-21) day. We had a recent snowfall of about 1/2 foot of snow (if you can believe the weather reports) and below freezing temps ever since to keep commuting interesting and that all covering snow blanket abundantly about us for the foreseeable future…enough about the weather!

We’ve had back to back U of M visit days, but at least we won’t need to return until “next year”…(Which is NOW as I’m updating my Update on 1-7-11…)

Today we saw the Pediatric Nephrology Nurse Practitioner. She is concerned about Josiah’s continued somewhat elevated blood pressure. Although he has not been very compliant with his CPAP (breathing machine for various sleep disorders) even if he used it regularly it may only drop his upper (systolic?) number by about 10 points. Therefore, she is contemplating a fairly complex titration off of the current two BP medications and a transfer to two different meds. Depending on how things go, though, he could conceivably have to use all four meds so this development remains to be seen.

Today’s UA (urinalysis) showed both protein and blood in his urine. Because of this she is sending home three specimen cups for three days of “first of the morning pee” to be collected (and refridgerated–Joy!) and given to the lab from more detailed analysis. Depending on the results we could be looking at a minor surgical procedure (kidney biopsy, including overnight hospital stay) within a few weeks. Fortunately she anticipates this scenario to be rather unlikely, though she wouldn’t give me a percentage opinion for planning purposes. Alternatively it may be necessary to do further kidney imaging studies (he’s has some done previously) which may involve Ultrasound, MRI, and/or MRA (the last maps out the blood vessels). Any of these events may occur within the next six months, but it remains to be seen. (January Update, we dropped off Josiah’s pee to the lab today, so the results are pending–Michael did NOT want to spend one of his days off of work, Christmas Eve Day, at the lab handing over Josiah’s pee–Go Figure!!!)

Email #21 Part 2 from this site:   http://www.carepages.com/carepages/JournalingForTheJazzman/updates/3344684

Historical Email #21, part II

Posted Jul 11, 2012 5:26am
Sent: Wednesday June 27, 2012 4:00pm (copied from Part I)

Back in September Josiah returned to the Liver Transplant Clinic for a followup visit. Now that some time has passed I don’t recall all the particulars (not that Any of Us want to hear about ALL of it!) of how things developed. The upshot is that for some reason They decided to take another look at the Biopsy tissue obtained in Josiah’s Liver Biopsy, from Christmas 2009 I believe. They either changed the protocols or they found new ways to assess this tissue but the bottom line is that they found at least one of these tissue samples to contain Pre-Cancerous cells (now T-FNH, not just FNH). As such they were now concerned with the possibility of some of the many tumors in Josiah’s liver heading into full-blown cancer. Since there was no way to monitor him for the cancer possibility due to the sheer number of tumors within his liver (they can neither image nor biopsy them all) they had no realistic way of knowing about the potential Cancerous type changes that could even now be taking place in his liver. Because of this they ultimately recommended that Josiah be listed on the Liver Transplant List.

That information in September kicked some of our chaos into pretty high gear. Josiah and I had to visit almost all his specialists by early December to get clearance from the various crucial departments for this potential transplant. This meant compressing some of what ammounted to two years worth of specialist visits into a space of about 2 months–and this included getting Neurosurgery clearance and necessary scans to rule out the need for (potential) Radiation prior to undergoing Transplant. As you might imagine, this made for a very hectic and stressful time.

Email #21 Part 3, continuing from above, from this site:   http://www.carepages.com/carepages/JournalingForTheJazzman/updates/3344685

Historical Email #21, part III

Posted Jul 11, 2012 5:27am

… this made for a very hectic and stressful time.

Following a Liver MRI the Transplant Team determined that Josiah’s Liver Tumors are growing and changing. Since they cannot rule out nor screen for cancer effectively in Josiah’s particular tumor-ridden liver’s case, we are now in the process of Pending a Liver Transplant. This was a somewhat involved process stretching over a number of months, but the current bottom line is that he was officially listed on the Transplant list around Christmas 2011 and he received the artificially inflated tumor-based number of 22, bumping him pretty high up on the list on January 10, 2012. At that time we were told that it might be about 3 months until Josiah received a liver. As that three-month deadline is/was quickly approaching, we just saw the Transplant Clinic today and learned that it is quite likely that a liver appropriate for Josiah will become available within the next 3 months but almost certainly in the next 6 months. The Transplant Doctor indicated that it would be extrememely unlikely that Josiah would wait a Year (in total) for a Transplant.

So, our whole family is undergoing an adjustment process to this new (and frankly devastating) situation. Back in September when they first recommended the transplant they said that given Josiah is not in obvious and active liver disease his survival rate from the Transplant would be about 95%. If we decided to wait until his Liver Issues had progressed into full-blown liver disease then the success rate would drop down to 88%. When questioning the Doctor’s for their take on it, if it were their child in no apparent distress would they choose to transplant or to wait they all said they would Transplant, because of the cancer risk. We agreed with their recommendation so now we basically wait for someone else’s liver.

In fact, the doctors said that Josiah’s ideal liver donor would be “a 12 year old gun-shot victim”–Wow! Of course this scenario is very difficult to process and very painful to contemplate for the other family. As such, when I pray about what’s going on, I often focus on asking the Lord to be with the donor family and for the child to know salvation and for the family to be making amazing memories with their loved one, so that when the time comes there won’t be regrets or unresolved issues. All of these things are ultimately in God’s hands, but frankly it is very difficult the concept that yet another person (beyond Christ) has to die so that Josiah may live fully.

The reason that Josiah needs a deceased donor liver is because of his atypical blood vessels in particular. Josiah doesn’t have a “portal vein”, the main vessel that brings blood into the liver. What perhaps should have become his portal vein bypasses his liver completely and dumps directly into one of the chambers of his heart. With a living liver donor you only get one lobe (I think) and no blood vessels to work with. In Josiah’s case they need a full liver and as many blood vessels as possible so that they can attempt a relatively “normal” blood vessel type connection into what is currently very atypical vascularization. This will ultimately make his surgury somewhat more complicatied than is perhaps “typical” for a liver transplant but is imminently conceivable and do-able.

As such, we are attempting to live a relatively “normal” (for us) life as we wait for the phone call informing us of when a potential liver becomes available. Whenever that call comes we have to speak with Liver Team staff within an hour and be at the hospital within Five hours. This is quite different from all 15 of Josiah’s prior surgeries (or his brothers’ combined 5) since we don’t have a date on the calendar that we can anticipate and plan accordingly. We really have to be ready to go “at the drop of a hat” and this is actually a pretty difficult situation to deal with. Prior to Transplant being on our agenda I honestly thought Open-Heart Surgery (times 2) and Brain Surgery was as bad as it would get–I wish. This is infinitely much more difficult to deal with and the necessity of another’s death for Josiah’s surgery to be a (potential) success is a heartache and a sorrow.

At least so far I haven’t felt my heart drop at every phone call wondering if this is “the one” but as time goes on that may become my new “norm”. Per June, I still am not “freaking out” every time the phone rings. However, I do have a “sense” that we may be getting that call before July runs out…but still God only knows the details here…

When I saw Josiah’s Primary Care Doctor at a Family Picnic her office sponsors every Fall, it was quite soon after the shock of finding out that Josiah would now, in fact, need a Transplant. (I had misinterpreted former Transplant Clinic discussions to mean that Josaih would Never be a Candidate for a Liver Transplant, so had simplistically thought we were “off the hook” in this arena and just being followed by Transplant/GI to monitor potential Liver changes. In fact they had meant Josiah wasn’t a Candidate Then…but he could ultimately be a candididate down the road.) She was seemingly devastated to hear the news of his need for Transplant. At a subsequent office visit I inquired about her experience with Transplant patients (as her practice is specifically for children with Complicated Medical Needs) and she said Josiah would be her First Transplant Patient (though she’d worked with some in her training). She said it was uncommon for most doctors to ever have even one transplant patient over the course of their entire medical career. She also said that it would be the hardest thing that I had ever done! Yikes, we’ve already faced some pretty rough stuff on the Josiah front over the years…Big Sigh…

So in prepping for Transplant Approval we saw Pediatric Cardiology and had another Echo Cardiogram and EKG to know what exactly we were dealing with from a cardiac standpoint. I had been anticipating the theoretical next Open-Heart Surgery that hadn’t yet happened in the Junior High Years (based on comments from Josiah’s heart surgeon in 2000 and the “interpretation” of said comments by the surgeon’s nurse later). Well, this recent Cardiology visit really laid those concerns to rest in that the Cardiologist completely pooh-poohed the surgeon’s suggestion that Josiah would need another Heart Surgery at any given time. The Cardiologist basically said that the Surgeons don’t get involved unless the Cardiologists need to involve them and based on Josiah’s most recent Heart Data there would be no need for Any Heart Surgery info the “Foreseeable Future”!!! That’s about as close to certaintly as I can recall any physician speaking so for now I’m taking that perspective “to the bank” and not anticipating any further Heart Surgery unless and until Josiah’s condition (from a cardiac standpoint) changes appreciably! What a huge weight off (relatively, as I’ve been carrying this theoretical pending surgery in the back of my mind since 2000)…so I guess, as always, we’ll deal with any and all of Josiah’s medical, and other, needs only as they arise–not before!

Now we are again at U of M for the 3 month Liver Transplant Clinic visit on June 27, 2012. We found out today that he is due for another Liver MRI to check on the developments of the tumors; this was scheduled for 7-10-12 (I also left a message with the Nephrology clinic to see if they wanted to add on imagnig of his kidneys as well, to see the status/progress of the echogenic kidney disease he has). These scans will continue to be repeated yearly, as long as he hasn’t been transplanted yet. Also, they are planning to petition for an increase in his number (from 22 to 24 or 25) based on how long he has been waiting for a liver and on his partiular needs. This potential numerical increase is something that can occur every 6 months that he doesn’t yet have a transplant. We discussed further particulars of the hospitalization and the post-transplant phase and how his lifestyle and education may be impacted and supported…

Our family is planning an extended trip to my parents Cottage in Gaylord starting this weekend, and I am hopeful that we won’t get called on a liver until we return home–please God, if You are willing. Usually this trip includes our family, my parents, my brother Mike’s family, and if we’re very blessed my brother Curt’s family coming up from Oklahoma. However, this year the Okies are again unavailable. What’s new is that Nathaniel has a job now so can’t get away for the trip (though he is currently at the Cottage with some friends this week for a young men’s hangout trip North!) Another no-show will be Clarissa, as she is invited to visit with a dear friend for much of the week, so it will just be Michael and I with our twins representing our clan this time.

Josiah is really looking forward to being at the Cottage and taking advantage of the Lake, as he knows that he’s supposed to wait a year post-transplant to swim in the lake again. Also, at our clinic visit today I explored the possibility of Josiah being able to go North again post-transplant (since he really enjoys himself up there and tends to spend quiet time doing puzzles, reading, watching movies, and occationally playing video games there too). We were pleased to hear that it may be possible for us to go back up there 5-6 weeks post-transplant (barring complications) so that is something that we may be able to make happen later too!

2012 is a significant year for us personally tool. 50 years ago my parents were married. This year they celebrated this milestone on an Alaskan Cruise with dear friends, my Godparents, also celebrating their own 5oth. This year it has been 20 years since Michael and I were wed! Recently Michael posted our “engagement photo” on his Facebook page with a brief blurb ending in “Bring on the next 20 years!” After all the many challenges we have faced and continue to encounter, that he can still anticipate joyfully and heroically leaping into the fray really reveals his amazing character.

A lady at our church recently remarked to me about how handsome he Was in that photo…and I pointed out that I still think he is that handsome, and even moreso now. She made no comment on my own appearance (maybe she thought that was a picture of “another woman” as it bears little resemblance to my current physical form). As we have been watching re-runs of the TV show LOST as a family, Michael has been commenting on the beauty of Hawaii. I made the (unrealistic) deal with him that if I ever actually lost the weight so that I could fit into my pre-pregnancy clothing and could thus wear a bathing suit I wouldn’t be comepletely be embarassed to be seen in Then we could plan a trip to Hawaii to celebrate…Perhaps this might happen before we reach our own 50th Anniversay…only God knows.

I’ll end with this thought as shared with me by Brandon some time ago…”My Mom thinks she’s fat, but I think she’s perfect!” When Josiah saw that engagement picture he thought we looked “funny” (likely meaning different than what we look like now). I like to take it a bit as Indiana Jones states in the movie Raiders of the Lost Ark, “It’s not the years but the mileage!”

God is still good, He continues to Strengthen and Sustain us. We do not know what our individual futures may hold but “as for me and my household” we KNOW Who Holds the Future…

Josiah is at peace…he already plans to tell the surgeons before they put him under for the Transplant Surgery that it’s OK if he doesn’t make it. He’s ready to see the Lord and he doesn’t want them to feel guilty if he dies. Perhaps it may be true that whether by his life or his death God will most certainly be glorified in and through my most amazing son Josiah!

God’s Blessings, Peace, and Joy be yours!

In Christ,


Beginning the then present tense wait for a Liver

Jazzman CarePage post from this site:   http://www.carepages.com/carepages/JournalingForTheJazzman/updates/3352049

This was the really intense day that Josiah almost got “his” liver, but only if the first recipient would have died, after someone had already died to provide the organ…this was an intense & strange day & I’m so glad the First Recipient apparently survived–perhaps we got that “on-deck” call so that we could be part of the prayer team to push that transplant situation into Victory!

Liver Available, He’s 2nd in Line

Posted Jul 22, 2012 2:09pm

Sunday July 22, 2012 approximately 1:30pm

I just got off the phone with the Liver Transplant Office. There is a liver that is “a perfect match” for Josiah that has become available. He is second in line behind another recipient “who is critically ill” and currently being prepped in the operating room to receive this liver.

They called us so that we would be aware, and ready to go, in the event that the planned recipient “takes a turn for the worse” or the liver is somehow not appropriate for them.

At this point we are waiting for a phone call between 5 and 6pm to let us know either way. I’m allowing Josiah to eat and drink right now the meal he was counting on when the phone call came, but he will get nothing further food- or drink-wise until after that anticipated phone call comes.

When you get this message, please lift up the donor family (I got No Information about them due to confidentiality, though the liver is “within a couple of hours” of Ann Arbor at the time of the phone call) as they are certainly grieving over the loss of their loved one.

Please also pray for the recipient in line ahead of Josiah. This person is very ill with their own liver disease, presumably. This likely means that having this transplant be successful for them may literally be an issue of life or death.

Finally, please lift Josiah and our family up in prayer as we prepare to potentially dash out to the hospital. As of right now, we need to stay home and by the phone for when this call, to notify us either way, comes through. I have a couple of things to attend to around the house in preparation for being gone for two weeks to the hospital, if indeed this liver ultimately ends up going to Josiah.

Thanks again for taking the time to read and pray and for thinking of our family as God brings us to your heart.

Blessings, Peace, and Joy be Yours,


Jazzman CarePage post from this site:   http://www.carepages.com/carepages/JournalingForTheJazzman/updates/3352157

Waiting Again for Phone Call

Posted Jul 22, 2012 6:33pm

Sunday July 22, 2012 approximately 6pm

I just got off the phone with the Liver Transplant Office again. They are not presently able to tell us whether we need to come in to the hospital yet.

Apparently there are some unusual things happening with the current intended recipient. The Transplant Coordinator, who is the one contacting us via phone, spoke with the Transplant Surgeon for the other case before calling us. He is not yet sure of the outcome of that planned transplant and told her to “not let us off the hook yet”.

So as things stand right now we await another phone call. I asked her to specify the time frame and she hesitated. I asked if she would touch base with us within an hour but she was still hesitant. When asked if calling back within Two Hours was possible, she agreed to that.

The bottom line currently is that we should get another call before around 8pm and hopefully then know the next step.

Fortunately Michael and Brandon just returned home about an hour ago from a Mentors’ Retreat at my parents’ Cottage Up North–meaning my van is back in town and available to take; I don’t really like driving Michael’s van as it is huge and a bit unruly on the road, to me. Also, if we do have to go in for the surgery tonight Michael is potentially available to come now.

Josiah is currently working on a 750 piece panoramic puzzle of the Brooklyn Bridge photographed during an amazing sunset, the Twin Towers are also visible. He is doing this with his Respite Worker. Yesterday he and I spent a decent amount of time working on this puzzle. I went to tackle more of it before heading to bed and discovered that the cats had Maliciously and Deliberately kicked the majority of the assembled portions to the floor…an ongoing metaphor in this household about how even things that are in the process of being done are so quickly undone…

Well, I’ll attempt to update you as I am able if we do end up heading to the Hospital tonight.

God’s Blessings to You and Yours,


Jazzman CarePage post from this site:   http://www.carepages.com/carepages/JournalingForTheJazzman/updates/3352222

Not Today…

Posted Jul 22, 2012 8:14pm

Sunday July 22, 2012 8pm-ish

Just got off the phone with the Transplant Clinic Coordinator and it looks like the other recipient is going to be able to use the liver.

For now we continue in the holding pattern…

I’ll send more details later.

Thanks for the Prayers and the Support,


Jazzman CarePage post from this site:   http://www.carepages.com/carepages/JournalingForTheJazzman/updates/3353154

Details on the Transplant That Wasn’t

Posted Jul 24, 2012 3:30am

Tuesday July 24, 2012 about 3:15am

Sometimes it’s just easier to write it down than to Not Sleep because thoughts are still churning and demanding attention…

Sunday was a pretty strange, albeit relatively peaceful, day for our family. It began with me finally falling into bed around dawn (I never sleep that great when Michael is out of town…current sleep issues or no). Nathaniel took Clarissa with him to our church while Josiah and I still slept. Michael and Brandon were in Northern Michigan wrapping up a mini-retreat with some guys from our church.

The possible liver transplant phone call came around 1:30pm, and Clarissa picked up the call–I’m ashamed to say that I was actually still sleeping so a bit foggy. When I asked her who it was she said someone from U of M so I assumed, and told her while on the way to the phone that I bet it’s that U of M Dearborn student who is supposed to tutor Josiah this summer, since she and I have been playing phone tag and I thought she was returning my previous call. So needless to say, I was NOT prepared to have it actually be a call about the Liver…

Let me backtrack here a bit. While we had been Up North the week of the 4th of July, when Michael and I were on Breakfast Duty, we had missed a call from U of M on his cell phone. Since our recent Liver Transplant Clinic visit had included jokes from staff about how they would probably be calling us on Tuesday that week with a liver, this was an alarming call to have missed. On top of that we were near the hour deadline within which we were to respond to any Liver offer when we discovered the message…fortunately the call was an appointment reminder about Josiah’s upcoming Liver MRI scheduled the follwoing week…

Jazzman CarePage post from this site:   http://www.carepages.com/carepages/JournalingForTheJazzman/updates/3353155

Details, #2

Posted Jul 24, 2012 3:41am

Tuesday July 24, 2012 about 3:30am

After getting off the phone I posted the basic facts on this Care Page and marked it as an Urgent Update…to hopefully start some people praying.

Next I called Michael on his cell phone to see how soon he would be home. Fortunately he was already on the road and nearing Birch Run so thought he would be home in about 2 hours. This meant that he and Brandon would be arriving home in the vicinity of the projected next phone call from Liver Transplant. I also spoke with Josiah, Clarissa, and Nathaniel about what was happening, but really just stuck to the basic facts that a liver was available but someone else was in surgery to get it and we were to get another call about the situation between 5 and 6pm. After that, I called my parents to apprise them of the situation and to plan out some possible scenarios of what might happen…

Later, after the second phone call came, and we still didn’t know what was going to happen yet we were thrust into the waiting mode all over again. It was actually rather strange since I had been planning on calling the U of M Dearborn Tutor again and also trying to reach the School System Tutor that I had not yet been able to directly reach to schedule some Summer Tutoring Sessions with both parties. Since we didn’t know if we’d be at the hospital for the next two weeks or so, these calls obviously needed to wait for more info.

Also, since I am the primary person to handle the family paperwork I spent a good bit of this waiting time getting some things squared away so that I could be gone for the next two weeks and not have anything crucial not addressed yet (or prepared to address while away)…some of this was sort of my own mental prep for the surgery…

Jazzman CarePage post from this site:   http://www.carepages.com/carepages/JournalingForTheJazzman/updates/3353156

Details #3

Posted Jul 24, 2012 3:52am

Tuesday July 24, 2012 3:45am-ish

In the meantime, my parents activated their own Prayer Chain of people to be praying for Josiah and the current Liver Situation. Later they called to say they wanted to come over and pray with Josiah, and they arrived before the timeframe of the second call.

Also, Josiah’s Respite Worker came over and I told her about what was happening (I think she came around 4pm) so I asked her to keep Josiah around the house and that he couldn’t eat or drink anything until we’d heard about the Liver. Also, I suggested that the two of them continue working on his puzzle (that was on a card table at the juction of the living room, dining room, kitchen, and entryway into our home–basically front and center for all the action that tends to happen…) as working on puzzles is very enjoyable and even calming for Josiah. My secondary goal was for him to get his 750 piece puzzle done so it could be packed away before any hospital run that may have been needed…

Well, concurrently to these events our other three kids were invited to a Church Youth Group outing at a local Putt-Putt place. You may think this is strange, but if you’ve been through as many surgeries as our family has you have to learn to cope somehow. One way our family copes, and frankly I foster this attitude for the others, is by maintaining as normal of an existance as possible for the other members so that the vast majority of the scenarios that involve Josiah “inconvenience” just he and I directly. So even though we didn’t yet know if Josiah would be getting transplanted then or not, we still were OK with our other kids hanging with friends…

Jazzman CarePage post from this site:   http://www.carepages.com/carepages/JournalingForTheJazzman/updates/3353158

Details #4

Posted Jul 24, 2012 4:05am

Tuesday July 24, 2012 almost 4am…

When Mom and Dad arrived to pray for/with Josiah the other three kids were about to head out the door. I asked them if they would be willing to stay for a few minutes so they could be part of this prayer time too and they did.

We all gathered in a “circle” around Josiah, including the Respite Worker, and his adult family members laid hands on him and prayed aloud. My father asked Josiah if he would be OK if Grandpa “anointed his head with oil” and Josiah was cool with that so Dad took out a tiny key chain vial of oil he carries as a Church Elder and placed an oil “cross” on Josiah’s forehead and said, “I annoint you in the Name of the Lord Jesus Christ”…

After his parents and grandparents prayed aloud with/over (my heart’s prayer was especially that the first liver recipient would survive the procedure and his/her life would be spared with that Transplant and also for the Donor Family who must surely be in intense grief) him I asked if the Respite Worker would mind getting some photos of the eight of us to mark the day (since we were all actually in the same room at the same time–a huge rarity now…and since this might have indeed been Transplant Day)…Michael then took a few shots of the other kids with Josiah too.

When Nathaniel, Brandon, and Clarissa got ready to leave I asked if they would be willing to give Josiah hugs before they left “just in case”. After said hugs went all around, Josiah blurted out “OK, guys, see you in heaven!”…he actually thought I meant “just in case he dies” when I’d only meant “just in case he’s gone to the hospital and surgery before you get home”…WOW, I think all Oxygen left the room for a bit there…

Jazzman CarePage post from this site:   http://www.carepages.com/carepages/JournalingForTheJazzman/updates/3353167

Details #5…and Last

Posted Jul 24, 2012 6:04am

Tuesday July 24, 2012 just a bit after 4am…

Looking back on my desire to get some photos takes me back to Josiah’s very first surgery. As an infant who had never been out of the hospital yet he had been sent via ambulance from his birth hospital in Dearborn out to U of M to have “open-heart surgery” at around 2 months of age. He was born with a fairly substantial hole in his heart, a VSD (Ventricular Septal Defect–a hole in the wall of the heart muscle separating the two lower chambers of his heart) which needed surgical repair to close it. The successful surgery involved him getting a Gortex patch to cover up said hole, so I guess you could conclude that Josiah has been weather-proofed from the inside…

His birth hospital had strict visitation policies and didn’t allow children under 12, I believe, to visit at all. Nathaniel, who was just two at that time had never even been in the same room with Josiah before. In fact the closest he had gotten to his littlest brother was a somewhat face-to-face viewing through the NICU (Neo-Natal Intensive Care Unit) glass window when he came along with some other adult family members, I don’t recall now if it was his dad and/or either or both of his grandparents? Also, Brandon hadn’t been in the same room with Josiah since his own discharge from the NICU at nearly two weeks of age, but prior to his discharge he and Josiah were often even laid in the same bassinet, as studies had shown that for twins, especially a sick twin, this was therapeutic…Thankfully U of M’s policies were so much more family friendly, so when the time came for surgery we were able to gather together in Josiah’s room, our “whole” family, even in the middle of the night, around 2:30am…

That time in our lives was so difficult it’s still pretty hard for me to talk about, but certain details are virtually seared into my memory. At the time of the twins’ birth Michael and I and Nathaniel lived in our first house Up North in Gaylord, Michigan. Since the twin pregnancy was high risk and Northern Michigan was not equipped to handle the unique circumstances of Josiah’s anticipated needs (he was known to be IUGR, Intra Uterine Growth Retarded–as in small for gestational age, known from 20 weeks gestation), we had been referred Downstate to a hospital near where my parents lived, in Dearborn.

After the twins were born they required the NICU for ongoing hospitalization, so ultimately Michael had to head back home to Gaylord to work while Nathaniel and I bunked at my parents’ house and I made daily treks to the Birth Hospital to nurse Brandon and pump breast milk for Josiah, who was just too weak to latch on and get my milk himself directly–he surely would have died without the miracles of modern medicine…and God’s ongonig interventions on his behalf. While Brandon was still in the NICU, my mom rented a breast pump from the hospital and when I wasn’t there nursing Brandon I was pumping milk for him, primariy–Josiah had a miniscule appetite and was fed, I believe less than 10mls a feeding back then (he was only 2# 6oz at birth compared to Brandon’s more typical 5# 4oz)–I also pumped milk at the hospital following these feedings…whatever, I was seriously becoimg a skim milk cow, since my body had never met a fat cell it would willingly relinquish, even to nurture my own offspring, and any perusal of the “breast milk freezer” at the hospital would bear this observation out; some other Moms’ milk looked like cream, while mine was a watery bluish virtually see-through light version of liquid love! Also, during Brandon’s week and a half hospitalization my mom would sometimes come along to provide “Kangaroo Kare” whereby she would nestle Josiah skin-to-skin during his gavage feedings while I was nursing Brandon; this was another form of therapeutic intervention that was supposed to help a very sick baby per research…

Later on, after Brandon was discharged from the NICU, I would spend about 4 hours a day at the NICU during two feedings with Josiah, where I always attempted to “nurse” him, even while he was gavage fed via an NG tube, and then I would pump milk after each feeding session to leave there for the staff to use to feed him while I was back with my boys and feeding Brandon my milk directly. While at “home” (at my parents’ place where they spent a lot of time watching Nathaniel and also Brandon when I was with Josiah) after every feeding of Brandon I would also pump for about 20 minutes, at least during the day, and accumulate this milk to take back to the hospital the next day…this all went on until Josiah was sent to U of M, which happened just prior to his first open-heart surgery…After surgery Josiah was no longer able to tolerate my milk due to leaking “kylous fluid” through his chest tube, so they ultimately fed him a complex formulation of Portagen, Moducal, and MCT (Medium Chain Triglyceride) Oil, which we continued to provide for him, per doctor’s orders, upon discharge; and that stuff was expensive in 1996, P=$40/can, M=$20/can, and MCT=$60/quart–but thankfully this was covered by WIC, as was his later prescribed diet of Pediasure which then cost $10/6 pack–wow…

At that time, Michael was in the habit of working Monday through Friday in Gaylord and then commuting to Dearborn, about 250 miles one way, to spend weekends with his family. And these weekend visits were the only time I got “decent” sleep, since Brandon required feeding around the clock every hour and a half to two hours back then, and he was nigh impossible to burp, so when Michael was there on weekends after these night feedings I would pass him the baby to burp and get some fitfull sleep until the next feeding, usually in less than an hour because the time counted above was from start to start of feedings, not end to start–I WISH!…

Anyway, when Josiah was to get that first heart surgery, I think it was scheduled on a Friday morning, so Michael came down late on Thrusday after work, not getting to the area until maybe around 1 am. Then he, my parents, Nathaniel and Brandon came to “visit” Josiah and I at his PCTU room (Peds Cardio-Thoracic Unit, kind of like a specialty ICU)–where we were finally, and in my mind possibly for the last time, in the same room as a family for the first time. This happenned around 2:30am and both boys were completely passed out sleeping and impossible to wake up, and Michael and I had to be back at the hospital before 6am for Josiash’s first-on-deck surgery of the day–yikes. We took some photos and some video, including some focussed on Josiah’s never-to-be-scarless-again-chest…Not the easiest or gentlest way to begin our Jouneys into Medical and Surgical Other-land, hmm?

These are the types of memories I may continue to wrestle, as the Transplant approaches and we face again the possiblity of losing our son during yet another life-threatening and major surgery…Fortunately God Is Still Bigger Than Any Baggage We Might Still Carry, even what a pack-rat like me can accumulate!!!

By the way, I bet you might guess that two Names of God that are Very Precious to me are Counselor and Comforter…and He can be that for you and your loved ones too!

Peace and Joy to You From and In the Midst of the Storm,


Jazzman CarePage post from this site:   http://www.carepages.com/carepages/JournalingForTheJazzman/updates/3357217

[7/17 Wow, I just noticed the date for that post & it was one year to the day to when Josiah was Transplanted himself.  Thank you Jesus for how far you have brought Josiah & us all!!!]

Maintaining Routines

Posted Jul 30, 2012 8:01pm

Monday July 30, 2012 about 7:30pm

After last Sunday’s almost liver for Josiah our family has been attempting to return to some level of normalcy. The upheaval and the uncertainty of not knowing if we had to go in for the liver was pretty challenging. For me personally, I felt a strong sense of calm amidst the storm, and expect that may have been due to so many prayers on Josiah’s and our family’s behalf. Also, it was a distinct relief to not have Josiah’s liver seem to indicate the loss of two young lives before it reached him. We’re trusting that the patient that did receive the liver is doing well and that God is working in their, and their family’s, life….

Jazzman CarePage post from this site:   http://www.carepages.com/carepages/JournalingForTheJazzman/updates/3358668

Being On Alert

Posted Aug 1, 2012 8:13pm

Wednesday August 1, 2012 approaching 8pm

Last night, technically this morning, I had an insight while attempting to sleep. I was wondering why, in part, it seems so hard to really settle down and get a good sleep. Also I was reminded of another time in my life when it felt like this, though of much shorter duration.

Years back when I was in Grad School/Seminary I had to be On-Call as a “Prayer Partner” at the local Christian Hospital affiliated with my University. This was a small part of our training program. Part of this On-Call time involved staying overnight at the hospital to be on hand in the event that any family might need our spiritual support during their hospital visit.

We were assigned a small room, I don’t believe it was a patient room, possibly one set aside for On-Call Staff. It had one bed only, so there were no “roommate” issues. I had a pager assigned and I was to respond to it in the event it went off. Not being used to being on-call by pager I was afraid I wouldn’t hear it (I guess I had sleep issues even back then, go figure). I had set the thing to vibrate and tested it on the bedside table and clipped to my sleep shirt and even to my underwear. I don’t recall how I decided to sleep with the pager but I do remember not sleeping well for fear of missing an important call.

Anyway, that sense of “high alert” is still how I feel during this waiting process for Josiah’s transplant. This is especially true since we had been told originally to expect the transplant to occur within 3 months, but it’s now been nearly Seven since he was listed with the higher number.

I think it’s hard for me personally to Fully Relax (whatever that actually means) during this waiting time. Hopefully this is a function of the relatively “short” wait we are anticipating (as opposed to another family we know whose daughter has been waiting for several years still for a new liver).

Hopefully once this transplant actually happens, and Josiah and I are home from the hospital, my body can stop being in this “semi-alert” state. There likely is an underlying amount of stress that goes along with such alertness, and that can’t be good to carry for such an extended time.

This isn’t to say that I’m not trusting God, or even at (relative) peace about what’s to come. It’s just the way I seem to be wired. It’s like knowing you have this huge final exam coming up but the teacher hasn’t set the date yet. However, as you wait for this info to come, they tell you to be ready to test within Five Hours of whenever they decide to call you…you just won’t get to know in advance when the call is actually coming, and this drags on for months and months. Is this whining, or just acknowledging “reality”, at least as I see it?

Not sure if my other family members feel this way or not…

Well signing off for now,


Jazzman CarePage posting from this site:   http://www.carepages.com/carepages/JournalingForTheJazzman/updates/3359326

An Answer to Josiah’s Prayer

Posted Aug 2, 2012 8:06pm

Thursday August 2, 2012 approaching 8pm

Last night while eating dinner Michael recounted an answered prayer story from his workday. His co-worker has lost an important piece of paper and had been frantically looking for it for quite some time. Finally Michael breathed an internal prayer that God would help his co-worker find this lost item. Literally as soon as he finished praying his co-worker had an “ah-ha” moment and remembered what had happened to the item.

This story prompted my memory of a recent prayer Josiah had had answered. When asking him to recount his own story he acted like he’d already forgotten it, even though it was just from a day or two before. Since Michael and I had talked about the incident when it happened we sort of filled in the blanks to re-tell the event at the table.

The kids had been invited to a Youth Group Friend’s house for a pool party and hangout time. Nathaniel had recently come home from work and wasn’t interested in going. Michael was gone to an event with “my” van (that gets better gas mileage and has working A/C, a big consideration for someone as prone to heat-exhaustion as I am) so I wasn’t planning on driving anyone. Brandon and Clarissa were preparing to ride bikes (7 miles one way), since they’d done it before several times and were cool with it.

Josiah kept expressing his desire to go along and Nathaniel even came down to try and exert a little pressure on me too (expressing atypical concern for his brother’s feelings, no less!). He couldn’t ride his bike too, for it was just too far and he couldn’t have been able to keep up with his siblings, and they would be coming back in the dark which would have also been bad for Josiah.

Anyway, just before B & C were to leave N came down from his room saying that he had changed his mind and was now willing to go. Since he didn’t expect to really have many guys his age there and since he was tired from a work day, this was a pretty big change for him.

Shortly after this change of heart on N’s part Josiah came to me to say that he had been praying to God that there would be some way for him to get to go to the pool party! Almost as soon as he was done praying his brother made the call and all four kids then got to spend the rest of the evening hanging with friends, not getting home until after midnight!

Even though Josiah didn’t spend lots of time around the other people there, he tends to pull off by himself in “crowds” (perhaps an autistic spectrum coping mechanism?), he still was really glad to have gotten to go along. At dinner I reminded him of how important it is for us, as believers, to keep those times where God obviously and directly answers our prayers in our memories to serve as encouragement for the many times when either the answer is “no” or “wait” or when the heavens seem as brass!

What a blessing to see Josiah’s relationship with the Lord bear direct and tangible fruit that remains which he, and we, can be encouraged by!



Jazzman CarePage posting from this site:   http://www.carepages.com/carepages/JournalingForTheJazzman/updates/3372953

[7/17 note: I mentioned at the end of this post that Josiah might sometime do an Update in his own voice & he has been doing such things for a bit now at his own CarePage blog, CarePages.com/JosiahTheOvercomer & in a different manner at his relatively new JosiahsFreakShow.wordpress.com !!!]

Sleep Team Visit

Posted Aug 24, 2012 3:34pm

Friday August 24, 2012 started writing ~2:30pm, ended ~3:30pm

Josiah and I are currently at U of M using the computers in the Family Resource Center…


We have no further news on the Transplant, though we see that clinic again next month and we get Liver Labs drawn again next week. Obviously, at this point there’s no way that the Transplant will happen this Summer in such a way as to not interfere with the upcoming school year. We are still waiting for that phone call and just trusting God for timing and strength to face things as they happen. Of course we still pray for healing and believe it would be ideal if God would do a miracle here. Josiah has come so far and overcome so many challenges so well that his life is already a testimony to God’s Grace!

Blessings to All,


PS I read this Update to Josiah to see if he wanted to provide any feedback or additions, but he didn’t. Sometime down the road, when he’s in the mood, he’ll likely do an Update in his own voice..so we can all look forward to hearing more directly from him when the mood strikes!…Thanks for keeping our family, and especially Josiah, in your thoughts and prayers…

Jazzman CarePage posting from this site:    http://www.carepages.com/carepages/JournalingForTheJazzman/updates/3392851

Today’s Transplant Clinic Visit

Posted Sep 25, 2012 2:31pm

Tuesday September 25, 2012 began 1:30pm and ended 2:30pm

Josiah and I saw an abbreviated Liver Transplant Team today, as some staff were unavailable and the ones we did see were needing to get to a meeting about all their patients. Nevertheless, we were able to get through our prepared questions and spend some good time with the clinic coordinating nurse.

The bottom line is that (as always) we are still on the wait for an appropriate liver to become available scenario. At our last visit, the team proposed to petition the “powers that be” (I actually don’t now recall if this is the organ donation registry or what?) to get Josiah’s listing number elevated. We found out today that his number was bumped up to 25 on July 10. They also will discuss in the meeting noted above about requesting another further elevation of his number which would then take effect on October 10, if so decided and also approved.

According to the Team the average wait on the Transplant List is 90 days. Also, the highest number you can get is 40. The numbers range from somewhat below zero to 40, with people not usually listed for transplant until their number is in the teens. When you get a number in the 20s then you should be transplanted “soon”. In Josiah’s case his current number would be 7 (based on the degree of liver disease that shows up in his bloodwork) but with the already applied exceptions based on the tumors he is listed currently at a 25.

Apparently what needs to happen is for a liver to become available that is in his blood type and meets his other criteria, like the age and conditions of the liver. As I believe I”ve posted before, they hope to get him a young liver so that should the transplant be successful this new liver would last for the rest of his life ideally.

As for the July 22 almost transplant, I made some attempts to get some degree of information about the person in surgery for that transplant. Apparently they have hqad no deaths associated with liver transplants from at least through the summer. Also, it is unlikely that Josaih would have been second in line behind an adult recipient. From this limited information we can speculate that the July 22nd recipient was a pediatric patient and that they are still living, so that the “perfect liver for Josiah” was to some degree successful in prolonging this other person’s life. I also have to believe that our prayers for this recipient were instrumental in sustaining their life as they had been “critical” prior to the transplant…so, “Thank you, Lord, for upholding this child and sustaining their life…and thank you for using our family and our prayers in this process!”

Another thing we discussed was when/if we might need to put the transplant “on hlod” depending on various circumstances our family might be facing. They said that these hods can go on “indefinitely” and are based on the needs of the family. These “social holds” would be set up via the Clinic Coordinator, whenever a scenario arises that would benefit our family to not have the transplant directly pending….Now we just wait to see the clinic again in three months.

In other areas, school’s been back in session since Labor Day and all four of our kids are adjusting to thir schedules. Josiah is taking 4 general ed classes (Science, History, Art, and Personal Living) and two special ed (Math and English) this semester. His science class is “Team Taught, as in has both a general and a special ed teacher teaching it. It’s geared to giving kids a bit of extra support within a general ed setting. Josiah also has ongoing Para Pro support as well as Speech Therapy, Occupational Therapy, and Social Work assistance at school. He continues with OT (and now very rarely Art Therapy) at Community Mental Health facilities.

Nathaniel is in his Sophmore year at U of M Dearborn and taking 14 credit hours and alsow working nearly full time. He’s been so busy that we barely see him.

Brandon is now a Junior in High School. He has a heavy academic load with a couple of Advanced Placement classes and other more rigorous and challenging courses. He is now on the Varsity Soccer Team in the position of Goalie. Since there is No backup goalie minding the net is 100% his responsibility. His team is currently struggling and “rebuilding” as well as adjusting to some coaching changes from previous seasons. Although he loves Soccer he appears to be looking forward to the end of the season so he’ll have a little more time!

Clarissa is still getting used to going to High School and to having such an early start to her days. She has been busy with swim team activities (we’ll be attending another Swim Meet for her tonight) and has also been both bonding and frustrated with the swimming program. She was supposed to be at school today by 6am for some “dry land conditioning” and we were a bit late as she was very hard to wake up She and Josiah share a lunch hour and often sit at the same lunch table. She also has befriending another Clarissa who is new to her school and even stands in the lunch line with her even though Our Clarissa isn’t buying anything.

Josiah’s new Repite Wroker seems to be working out quite we3ll. They seem to have a good rapport and this young man really appears to enjoy his company. Josiah even prayed aloud for him on our way to the hospital today and is looking forward to God interveinging in their relationship and using Josiah to share the Gospel with his Wrker.

Michael, Brandon, and Clarissa returned from a long weekend up at our family’s hunting shack and nearby bunkhouse. They were up for the Youth Hunt. There were a total of 16 people up for this momentious weekend (the first Shack hunting trip that included girls!) and Nine of thse present are our family members. There were great times and many stories and though no animals were harmed (not for lack of try8ing) Brandon actually was able to take 4 shots at three differreent deer…and for our Shack, that’s A Lot of hunting action.

Well I guess I’ll wrap up here and will probably not do as much proofreading as usual since I have a sore back and a voucher for a massage so may see if I can sneak this in on our way out of the hospital.

So if you think of us please continue to keep Josiah in your prayers for God’s timing and provision of the liver for him and for God’s grace to continue to sustain us as we continue to Wait…

Blessings abound to all,


PS, I jsut spent nearly 15 minutes working on some corrections to this posting but hit some random wierd button on the mouse here and lost them all…so in the interest of managing my time you all get to see this posting “as is” with warts and all! Thanks for reading along and thinking of us and for your prayers for our family…God Bless!

Jazzman CarePage posting from this site:  http://www.carepages.com/carepages/JournalingForTheJazzman/updates/3471051

Cardiology Visit

Posted Feb 12, 2013 1:22pm

Hey all, this is a theoretical “quickie” in that we need to get out of here in abou 15 minutes. Josiah and I are again at the Family Resource Center so we can both use computers following today’s Cardiology visit.

He was scheduled at 9am for an echocardiogram and then we saw several staff members soon thereafter. Per the echo, and clinical visits, everything with his heart is “stable as a rock” to quote the senior cardiologist. He continues to have very minimal valvular insufficiency at the malformed aortic valve, but not appreciably more than was present about a year and a half ago.

He also has some enlargement of the heart muscle, particularly around the left ventricle. This is likely related, in part, to his persistent High Blood Pressure. There remains the possibility that some of the condition may improve, particularly should his blood pressure become more stablized at a normal pressure post-transplant.

At this time they do not anticipate any (significant) cardiac problems in the next 10-15 years. They also discussed the possibility of future surgery, even to the replacement of the aortic valve Without having to go open-heart–through the heart catheterization process, I believe. This is great news in that Maybe we can hope that they never have to completely open up his chest again!!!

They said that he is completely good to go for the transplant, or any other surgery, for that matter. In fact, his heart is doing about as well as it could be doing given the nature of his underlying congenital heart issues. Thank You Lord!

On anonther note, I had to spend some time trying to generate a refill on a prescription that has been pending for more than a week, through another department. Hopefully this issue will be fully resolved, but I won’t likely know until this evening…

Finally, I took the time to return the phone call of the Genetics Department to schedule another follow-up visit. Someone from that office had left a message on the answering machine a while back and I’m Finally following through on this. They had specified that they wanted Brandon to come along, if possible, so that they may learn something from the twin comparison that could better enable them to attempt to diagnose Josiah’s presumened genetic syndrome…at least that’s why I think they wanted Brandon along…

Interestingly, during discussions with the Cardiology Fellow he mentioned Marfan’s Syndrome as being a condition that can affect the aortic root, a place surrounding Josiah’s heart where there is already evidence of some dilation and thinning of the tissue. This scanario is associated with the bi-cuspid aortic valve that Josaih is known to have. It also can be associated with connective tissue disorders–something Josiah has been suspected of having, but which has never been proven…perhaps when we finally see Genetics, currently scheduled for May, they could answer some of these questions…

Well, I’m going to do a very cursory check over and then get going.

Blessings to all,


Jazzman CarePage posting from this site:   http://www.carepages.com/carepages/JournalingForTheJazzman/updates/3487167

December’s Transplant visit

Posted Mar 13, 2013 4:11pm

Briefly, I wanted to fill you in on some of the transplant developments from our prior appointment before going into details from today’s visit.

Our December visit was unusual in that they had erroneously scheduled us for the Kidney Transplant Clinic instead of Liver. This was because we were to have a consecutive appointment with Josiah’s Nephrology Nurse, who also works alongside both K & L Transplant clinics. They had put our appointment on a day to see the nurse, but when she’s with the Kidney not Liver Clinic. This mixup caused Josiah considerable distress because until we met with the staff we couldn’t rule out the (seemingly unlikely) scenario of him needing more intervention for his “kidney disease”.

Ultimately it was determined that staff had scheduled us with the right person but on the wrong day. Due to this scheduling error we did Not see very many of the Transplant Staff, since they were mostly in a meeting.

A good thing that came out of the error was getting to spend longer than typical time with the head of the Liver Transplant Program, Josiah’s Liver Doctor. Since our September visit they had petitioned the organ donation registry to have his listing number again increased. This visit represented the first time that the request was denied. The organization felt that his number of 25 (which has been his number since September, I believe) was adequate for him to receive offers. In fact, the Doctor confirmed that Josiah had already been considered a number of times for livers but they had ultimately always been given to others.

Part of the reason for this was that whenever a liver became available since Josiah requires a whole liver if there were other (peds?) on the list that could accept a divided liver the committee would likely decide to give it to two people rather than just the one.

Another factor in decision making is the degree of liver sickness a potential transplant recipient has. Since in Josiah’s case he does Not have obvious liver disease it is likely that sicker people are given the livers before he would be selected. When I explained this discussion to Michael later he became convinced that Josiah will Not receive a liver unless and/or until he develops liver disease; something the doctor denies.

This Transplant visit was the first time that the doctor didn’t not say he expected Josiah to receive a liver within the next 90 days. He said he thought it would be silly to say that given that we had already been waiting for more than a year. He did, however, indicate that he hoped to transplant Josiah before he turned 18, which would be early December 2013.

Based on these discussions, and further conversations with Michael, it came to “feel” to us like it was likely that he might not get a liver until later in 2013. I had expressed to the doctor that I wouldn’t mind the transplant not happening until Summer as he wouldn’t have to miss (as much) school then so it might have diminished lifestyle consequences then. Having expressed these thoughts to the doctor I wondered if those sentiments/preferences might have any impact whatsoever on the transplant timing…

Another development from the lengthy conversation with the doctor was his admission that they think it is unlikely that Josiah has Hepatocellular Carcinoma–Liver Cancer. The risk of some of his tumors/nodules becoming cancer or already being cancerous remains, but based on thair available data they think that is not likely present right now. Of course they cannot say definitively so the need for transplant remains. However they do scrutinize whatever markers they can, like AFP–Alpha Feto Protein, which so far seem to indicate that cancer is unlikely. This admission on the doctor’s part helped to clarify why they were still comfortable in waiting for the “perfect liver” for Josiah. They do NOT want to transplant him with an inadequate or diseased liver, which might be appropriate for someone that needs almost any liver to survive but wouldn’t be right for Josiah who is seemingly healthy in this arena. They will continue doing their imaging of the liver on a yearly basis, as long has he hasn’t yet been transplanted, to monitor the status/changes of his liver tumors/masses.

In meeting with Nephrology we were also able to see a doctor in this clinic and to discuss his kidney issues in more depth than we typically do with the nurse. So far the kidney disease is something they will continue to monitor but the liver transplant will continue to take precedence. It is possble that once he is transplanted that much of his high blood pressure and even his “bright” kidneys will resolve. However those potential developments won’t be able to be demonstrated until 6-8 months or more post transplant.

Well that’s the majority of what happened in those Decmeber visits…so after posting this I’ll start working on today’s info…thanks, as always, for your thoughts and prayers and your kind words. We appreciate the support!

Blessings to all,



Jazzman CarePage posting from this site:   http://www.carepages.com/carepages/JournalingForTheJazzman/updates/3535583

6-19-13 Transplant Clinic Visit, etc.

Posted Jun 19, 2013 4:31pm

We’ve been pretty busy in the last few weeks. The first week of June I completed the IEP (Individualized Educational Program/Special Ed paperwork) process for Josiah. This continues to be very labor-intensive for me and very stressful, but it has also been overall quite successful for Josiah for some time now. He came to one of the meetings, the one where we were scheduling classes for his Junior Year, so it was great that he could give some input from his perspective here. Also, Michael was able to partially attend Two Meetings, which was a huge support and encouragement to me!

Josiah is currently On Track to Graduate High School with his classmates!!! He has just shy of 3.0 (2.9??) for his GPA (Grade Point Average), at least through the third card marking, I haven’t seen his final grades, which means that overall he is achieving a B- average in school. He continues to take 1/2 special ed classes and 1/2 general ed classes. We heard great things about his attitude and work ethic from several teachers over the course of these meetings and it is clear that people working with Josiah at the High School are really supportive of him, and often impressed by his character! In fact, Josiah is often used as an example for others to follow. He even had the opportunity to be “in charge” (something he lives for) of a couple of football players for a project in one of his classes!

He has made many strides here and come quite far, though still retains significant challenges with math. At this time it appears highly unlikely that he will be able to meet the regular math requirements for graduation, so an alternative path for him to complete his secondary education will still need to be explored. He again meets the criteria for ongoing math intervention over the Summer under ESY (Extended School Year), so will be receiving 12-14 tutoring sessions during July and August; not something he’s looking forward to!

He experienced an untimely dizzy spell that made him miss the last day of school and two finals. His one teacher sent the essay portion of the final home with Brandon, Josiah completed it the next day and returned it to his teacher then. He ultimately was allowed to skip the rest of that final and the entire one for his other class, so he really got blessed here, from his perspecitve!

We had partly straightend out some insurance issues which have allowed his Respite Care to resume! However there are some new challenges arising with a different insurance that prevented him from recieving OT (Occupational Therapy) lately. We hope to have this situation resolved soon, though are waiting on paperwork to facilitate this resolution process.

Two days ago, Josiah and I had an exceedingly long U of M day. He started the day with a 7am MRI of his liver, an image they plan to repeat yearly until he receives his transplant. We were supposed to have received a “pre-call” to explain the details of his MRI prep, but this call never came through. As such, I planned as if he might need sedation and kept him from food and liquids except for a few sips of water in the morning to swallow his pills. However, what I didn’t know, or recall, was the need to arrive a half hour before the scheduled procedure time, so we likely helped to set the staff’s day back; payback for the time our 7pm MRI didn’t start til after 10:30!

This was compounded by the fact that Josiah had a difficult time complying with the breathing directions of the technician during the MRI procedure itself. She told me afterward that she ended up having to take 2-3 times the normal number of images because he was so challenging in this area. In retrospect, I think the main issue here was communication and Josiah’s processing and autistic spectrum issues. Likely when the technician told him to “hold his breath” he just stopped breathing and waited, but didn’t take in a full breath to hold. Then since he was retaining inadequate air he couldn’t hold still long enough. What needed to happen was more explicit directions, like “take a big breath and hold it until I say you can breathe again” since he kept being worried about when he could breathe again. These are the picky aspects of living with autism that come into play. Of course having this insight Prior to the MRI could have really helped. Next time, I hope to remember this situation and encourage the staff to do some practice runs with him before he enters the machine to ensure that he can claarly understand and follow the instructions…

After the MRI we went to the lab to have his blood drawn for his liver bloodwork, after confirming the contrast dye used for his MRI wouldn’t interfere witht he results. There was a very long wait here, but at lease we wouln’t have to get to an outside lab nor arrive exceedingly early for his Wednesday appointment. Then we spent the majority of the day in the Family Resource Center. Josiah was on the computer for virtually the entire time and only reluctantly paused for some snack and drink time.

Late in the day we headed back over to Med Equip, U of M’s Medical Equipment facility located off campus. We got there in record time, given downtown Ann Arbor’s traffic challenges that time of day. We were able to get his new CPAP machine then! However, we had forgotten to bring his previously received mask with us so were unable to address some of the mask issues he may have. We are planning to go back there next week, after his Nephrology appointment, to take care of these mask issues.

Yesterday Josiah had mostly a day off, except for doing some stuff with his Respite Care Worker. However, I was busy attending a medical appointment with/for my husband, Michael. He’s had some things come up that will require further looking into and has a procedure scheduled in mid July to begin to address this. Please keep him and his health in your prayers.

Today represents another long day in Ann Arbor. Josiah’s Transplant Clinc visit was scheduled for 8:40am and we arrived within the margin of error (a less than regular occurance for us). We even experienced a literal answer to parking prayer on the way in and as I prayed some of these things out loud the kids witnessed it directly. By the way, I did indeed say Kids. Being that school is now out for the Summer, I invited/compelled Brandon and Clarissa to come with us to Josiah’s Transplant Clinic visit. I also asked Nathaniel, but he had to work today (or certainly he would have been Thrilled to have come–or Not!)…

Brandon and Clarissa were less than enthusiastic to come along today, but they both brought good books and have made significant headway in their reading. We had quite a long appointment time with various staff members and were not completely done with the Clinic visit and hospital floor tour until about 4 and 1/2 hours later–Yikes! The kids have been troopers.

We saw a technician/physician’s assistant who took down his medication information. She may have been the same one who took down his vital signs earlier, but I’m not sure. Then a nurse, who was filling in for the regular Transplant Nourse Coordianator, came in and took detailed information about his health. The Transplant Nurse came later and brought the paperwork from his bloodwork and growth charting. She also printed off the MRI report for us to get a copy. Next, the Transplant Social Worker, with a Trainee, came and she was very thorough in explaining some of the transplant procedures and what to expect Josiah’s experiences might be post-op. She went into details like the location and purposes of some of the “lines”, both venous and arterial, he should have placed for use in his post-op phase. She also detailed some aspects of the difference between the initial ICU (Intensive Care Unit) and patient care floor aspects of his hospital stay. She was followed by the Transplant Doctor accompanied by the second nurse. He showed us some of the MRI imaging and explined some things to the kids a bit. Finally, we saw the Dietician along with an Intern to discuss Josiah’s dietary challenges. They printed off some helpful info for us to use at home.

A key piece of info from today is that the MRI has shown no appreciable changes in Josiah’s liver masses. This makes them appear to be relatively stable and is an indicator that cancer is less likely. The doctor said that HCC (Hepato-Cellular Carcinoma) is often very aggressive in children, so that if Josiah had it it could be likely that there would have been growth in the liver masses in the last year. However, this still does not Rule Out HCC, just support the liklihood that it isn’t currently present. He reminded us that the nature of the masses is still such that the transplant needs to take place to remove these masses and to improve the liver blood flow. The Nurse had gone into a helpful explanation of how the atypical bloodflow that surrounds Josiah’s liver could be associated with high blood pressure and that post-transplant some month’s later we may see some improvements in this condition of his.

Something else we learnd is that they have not done another pediatric liver transplant since Christmas. Although the nurses said there have been no livers available, the doctor said that there have been no livers that they would accept, not even for a very sick patient. They reminded us that the Summer months often see more organ availability due to riskier behavior on the part of teens and others.

After the clinic, we went to the 12th floor to tour the patient and family areas. On the way, we ran into Josiah’s Nephrology Nurse and she showed us another aspect of the new hospital unfamiliar to us. This is called “U of M Game Day Room” and has computers, crafts, and sports equipment. It appears to be open from 8am-8pm so we may meander back there after we are done here to check it out more thoroughly. She also told us that she will be changing departments in the next 2 months so next week’s appointment with her will likely be our last. It will be sad to lose her from Josiah’s health care team for she has been really great to work with. It sounds like Josiah will continue to get Nephrology care from a physician as no nurse practitioner is currently planned to replace her…

The tour phase was nice in that we got to see a couple different types of patient rooms. They are all private rooms, which will certainly make the hospital stay much more pleasant! They have in-room refridgerators and flat-screen TVs mounted in each room. These TVs contain a variety of integrated movies and video games and also allow for internet access. We saw the “nourishment rooms” where we can replenish ice and some drinks and some minor snack items are available–this will definitely make Josiah’s stay more enjoyable since he is a big-time snacker and giving him some options will enhance his control over his experience to some degree. It will also help some of his visitors, who tend to get a bit antsy and might enjoy a minor posicle break, for instance. Then we saw a small sitting area that has an integrated telescope. The kids had fun looking at some of the sites from afar and spying on some picnicers too. The last tour stop was a family lounge and kitchenette. This space would allow more people to gather and converse and also some more direct food prep than is possible in the “nourishment rooms”. There is also an attached complementary laundry facilty, which is available 24 hours a day, for us insomniacs!

After this tour we headed to the Family Resouce Center to show Clarissa, who’d never seen the new aspect of Mott Hopsital. Brandon retrieved our picnic lunch, which he and Clarissa had assembled this mornig and they selected a secluded part of the nearby cafeteria where we could eat lunch before returning to the computers. In all a long and busy and informationally overloading day…

Blessings, Val

Liver Available, Waiting for Surgery…

Jazzman CarePage posting from this site:   http://www.carepages.com/carepages/JournalingForTheJazzman/updates/3552965

Liver Available Now!

Posted Jul 28, 2013 8:21am

Just a quick note, we received a phone call just before 8am Sunday July 28, 2013 that there is a liver available for Josiah today. Michael and I and Josiah are preparing to head to the hospital shortly. We need to be there around 10am and they anticipate doing the surgery sometime later today.

Please keep us in your prayers. I will attempt to send further details as I can from the hospital.

Jazzman CarePage posting from this site:   http://www.carepages.com/carepages/JournalingForTheJazzman/updates/3553010

Message from Josiah

Posted Jul 28, 2013 11:13am

This is Valerie, Brandon and Clarissa are camping with our church this weekend, so Josiah didn’t see them before we left. He did see Nathaniel briefly this morning before he left for work. So this below is what Josiah wanted to share (keep in mind that he’s on the Autism Spectrum)…

“Good morning Brandon and Clarissa.” “I am here to say that no matter what happens, I am remaining faithful to Jesus Christ. “Goodbye, and God bless America.”

Valerie will attempt a longer explanation shortly…Blessings

Jazzman CarePage posting from this site:   http://www.carepages.com/carepages/JournalingForTheJazzman/updates/3553071

Sunday Details…so far

Posted Jul 28, 2013 2:48pm

We got the call around 7:45am that they had a liver for Josiah and they wanted us at the hospital around 10am. We spent the next two hours getting ready. Although Josiah and I both had bags packed and ready to go, I hadn’t recently checked the contents so was no longer sure if the clothing reflected this season. As such, I ended up gathering some more items to augment my stuff…plus lots of books, as I’m planning to stay with Josiah for the duration.

Josiah got to see Nathaniel briefly before he went to work (Brandon and Clarissa are at our church’s campout at Somerset this weekend and coming home later with church family) then the three of us, Josiah, Michael, and I headed out to Ann Arbor. They wanted us to check in at area 5-C of the University Hospital. We arrived around 10:30am, and had called the Transplant Coordinator back to inform her that we would be somewhat later than hoped–which was no problem.

Before we left Michael made a number of phone calls and sent out some text messages to get the prayers flowing. I attempted to send out a minor update urgently through CarePages, so hopefully that went through. Based on the timing of these calls/interactions it looks like there are quite a few people from a number of churches across the country that are already praying for Josiah!

We are currently camping out at room 5440 of the University Hospital prior to Josiah’s surgery. We don’t have a timeframe for this procedure yet, but it will be some number of hours still. Based on discssions with one of the surgery fellows, as of about an hour ago they had not yet harvested the organ from the donor (who is “brain dead” but on life support somewhere in the Michigan, Ohio, and Indiana area). Per the Surgeon, this is a “Perfect Liver” for Josiah and comes from someone of a similar size.

[7/17 Note: reading about the donor reminds me that we have yet to more directly thank the donor’s family through Gift of Life—Hopefully we can aim to do that within the next year, by the 5th Anniversary of this precious family’s sacrifice…]

So far, Josaih has had his blood drawn, had a bedside chest x-ray, and another bedside test, perhaps an MRI, since I was talking to the surgeon I didn’t catch it. He is in good spirits and declined the option to possibly eat a bagal, because he didn’t want to get his “food lust” going…so surgery is quite some time away if he could have eaten a bit. Michael just popped in here, I’m at a family waiting room down a couple of halls from “our” room, saying they want Josaih to eat now, so we are definitely in for the long haul tonight…

Nathaniel is working til maybe 4pm and then he should come with Brandon and Clarissa to the hospital this evening. My parents are planning to come in the next hour or so. This should mean that Josiah may get some decent time with his closest family members before undergoing the surgery.

It’s possible the surgery will take 8-10 hours or so and he may be hospitalized for 1-2 weeks (one is the best case scenario, but 1 1/2 sounds more typical).

They sent us to University Hospital, instead of Mott, for the surgery because of the complexity of this surgery (due in particular to Josiah’s very atypical anatomy) since UH has more experience than Mott with such transplants. These surgoens regularly work cases together (there may be 4-6 surgeons in his transplant surgery) and are very familiar with coordinating care between the various U of M facilities. We’ll likely be heading to Mott following the ICU aspect of his stay. It still will likley be a number of hours before there is much more to share, but I’ll post updates as I’m able.

Thanks again for all of your prayers and support during this challenging time for our family. We really appreciate each of you lifting us up to the Throne! Please also keep the donor’s family, and other transplant recipients from this donor in your prayers. Apparently the donor is of a similar size to Josiah (he’s about 5′ 4″ and 115#) so this could be from a young person/child or a small adult and the loss for their loved ones is unimaginably painful.

Based on Kara’s (see Kara Westra’s CarePage) recent aborted transplant I asked quite a few questions about this particular liver and the possibility of it being used by someone else even if it’s not appropriate for Josiah. As long as the liver is usable at all it looks like it will benefit someone. Josiah is first in line and is not bumping anyone who is very sick; there are one or more possible recipients that are also being considered in the event this liver won’t work for Josiah, but they are not on “standby” like we were almost exaxtly a year ago; they do anticipate this liver will be used for Josiah.

[7/17 For some reason as I’m reading through this post  to clean it up a bit, I find myself getting emotional…hmm…]

Well, I’m going to do a very cursory check of my spelling etc then head back to the room with Michael and Josiah. Thanks for being there and for caring for our son…Blessings, Valerie

Jazzman CarePage posting from this site:   http://www.carepages.com/carepages/JournalingForTheJazzman/updates/3553156

Further Info, Sunday evening

Posted Jul 28, 2013 7:34pm

Well it’s been a busy and somewhat uneventful day so far. Josiah now has an IV in and was allowed to eat a late lunch (he finished eating about 4:30pm and drinking about 5pm). Now he is back to waiting without food or drink for the surgery to begin.

He’s had to use the bathroom a couple of times since we’ve been here and Michael got to help him in this arena! I usually assist him with this concern when he needs to give samples for Nephrology so I’m quite glad that Michael can assist him with “man-land”…They made him use a plastic “urinal” so that they can collect, measure, and test the urine (but I don’t know what they are looking for).

They also had to check his blood sugar prior to eating, since he has (unofficially) hypoglycemia. Although his hands were shaking and he was seemingly lethargic and pale and somewhat more inattentive than usual (signs of possible low blood sugar, I think) his number on testing was OK.

Valerie’s parents, Bill and Elaine (Josiah’s only living grandparents) came this afternoon and are currently hanging out in the room with the rest of us. They came bearing presents for Josiah, dinner for Val, and a snack for Michael–he’d gotten away earlier in the afternoon to the hospital cafeteria to make sure his own blood sugar was OK for Michael has “official” hypoglycemia.

Our pastors, Andy and Janice, came for a visit on their way home from visiting with their son in the Chicago area (who is recovering from his own health concerns). They spent a while conversing with all in the room and then we all had a lovely time of prayer. During the prayer, the Pediatric Liver Transplant Surgeon popped in and Michael spoke with him briefly, so that he would come back a little later.

Shortly after the Pastors left the Surgeon returned and gave us a bit of an update. Apparently things are taking much longer than he’d hoped. “There’s like a thousand things that need to happen and we are responsible for like one”…Originally he had been hoping/planning on doing the Transplant around 1pm. Now, the very best-case (and presumably unlikely scenario) is beginning around 11pm. Val guestimates that things won’t start happening until sometime between Midnight and 2am…hmm….

Josiah spoke with both Brandon and Clarissa in separate phone calls. As of the last conversation, Nathaniel hadn’t come home from work yet, so we aren’t sure when the kids will get to come for a visit.

Michael is prayeing about what he should be doing as the night progresses. I’ve giving him the OK to Not stay the night with me, even if it’s when the surgery is happening. I had always thought that he would be going to work tomorrow and visiting sometime in the evening with hopefully all the kids. He’s not sure yet what he wants to do, but will likely catch a ride home with Nathaniel later today so as to get a good night’s sleep and then be fresher to face whatever tomorrow brings here.

Val’s dad is likely going to get a ride home with Nathaniel too as Val’s mom is thinking of spending the night here at the hospital now. Please pray for wisdom and guidance for both Michael and Elaine as they decide how to handle tonight and tomorrow. I am personnally fine with being here alone over night, even during the surgery, if need be. However, once Josiah is done with surgery and in the ICU and I get a chance to see him I will certainly hope to collapse somewhere and get some sleep.

This sleeping arrangement is somewhat more complicated by arriving during the weekend. Some of the insurance authorizations need to happen during weekday business hours. As such we had a couple of conversations with the covering Social Worker from the ER, but many of these issues have been previously dicussed with the Transplant Social Worker. Hopefully we’ll see her sometime tomorrow to work through the various concerns.

The ER-SW did make some arrangements for Val and/or Michael to use the Ronald McDonald House (something we’ve never done before) but given the timeframe of surgery tonight and the fact that this service is for a bed and shower only, this will not be useful tonight. It looks like Val and whoever will be hanging out in either the 5th floor ICU waiting room or the 1st floor main surgical waiting room during this night and not sleeping (much) but perhaps dozing somewhat in between surgical reports…assuming surgery happens at all. Until they take Josiah to surgery we will continue to use the room we are in.

By the way, according to the Surgeon, it appears that everything looks good from Josiah’s end for the surgery to proceed. It still remains to be seen that the liver is going to be able to be used. He made it sound very unlikely that anyone but Josiah will get this liver in that he only anticipates the surgery not proceeding if there is something wrong with the liver itself. In the meantime we wait, and sometimes pray.

Just as I sat down at this computer a couple from our church, Fred and Sylvia, were walking down the hall. And literally as I was typing the previous sentence they came walking by again on thier way out. They stopped by the room to visit with Josiah and Michael and my dad and they prayed with everyone. My mom and I are in nearby ICU waiting rooms using the computers to keep the information super-highway humming.

Thanks again for all your thoughts and prayers and kind words of encouragement. God is upholding each one of us and sustaining us through these challenging yet anticipated times!

Blessings abound to you all,


PS Michael just popped in to say they are letting Josiah have another meal so that makes it likely that surgery will be even later than stated so far, as they want him NPO for 6-8 hours before operating. Also Nathaniel called and they won’t be here until 9pm or so…

Jazzman CarePage posting from this site:   http://www.carepages.com/carepages/JournalingForTheJazzman/updates/3553255

Sunday around 11pm

Posted Jul 28, 2013 11:02pm

Well, the majority of the family left about a half hour ago. Nathaniel came with Brandon and Clarissa for about an hour and a half visit. Before their arrival Michael and my parents got a break down in the cafeteria and didn’t return to Josiah’s room until after the other kids arrived. Nathaniel even brought Josiah a Superman gift, which was quite thoughtful and much appreciated.

[ Note: How Apropos, given our last posting at the bottom of this “page”, hmm!]

Josiah still seems to be in great spirits and is doing overall quite well. He ended up getting to eat another meal (he was happy to eat hospital pizza and glad to get photoed doing so–hmm), as I noted at the end of the previous update and finished eating around 8:30pm. Based on previous info, this means that it is quite unlikely that surgery will be happening before 2:30am.

The intern stopped in briefly to pick up the consent forms that I’d previously read exhaustively and to answer any questions. Right now the main thing we hope to know is the time-frame and that is the one piece of info that remains quite elusive.

At this point, when I get back to the room shortly I’m planning to encourage both Josiah and my mom to considering resting/sleeping a bit, if they are able. And maybe I’ll even catch a bit of a catnap.

Michael asked my mom to send him text message updates of significant developments (I don’t have a cell phone!) throughout the night, and he’ll see where things are in the morning before he likely makes a decision about whether he ends up working tomorrow or not.

Please pray for wisdom, strength, and favor for each of us in the various choices we face as we continue to wait on others’ timing.



Jazzman CarePage posting from this site:  http://www.carepages.com/carepages/JournalingForTheJazzman/updates/3553299

Monday 3 am, briefly

Posted Jul 29, 2013 3:37am

Well, the nurse has been paging the Surgeon and/or the Intern on and off since around 12:30am with no response. She thinks they are likely tied up with a case in the ICU/OR and unavailable. I had hoped to get some basic info about possible time frames for surgery to better guage what sleep we might get tonight. As it is, the nurse pulled a second fold-down style chair into Josiah’s room and my mom and I have stretched out a bit and “rested”. I was dozing from 2-2:30am probably awakening nearly a dozen times within that half hour. Josiah was nearly asleep, but since there are no “pull-ups” available, to help with his nocturnal eneuresis (bedwetting) and he refuses to wear the diaper the hospital offered, he ended up waking up and getting engrossed in a few TV shows. Mom gives all the appearance of sleeping but speaks when we whisper of her “sleep”.

Saturday Michael and Josiah had a great day together; it couldn’t have been planned better had they known That Call was coming Sunday. They went out for a big breakfast at a local restaurant and then saw a new movie at the theater. Later after being low-key at home they ended up watching one of our Lord of the Rings DVDs. They spent great time together and while everyone else was out of the house I caught up on some rest and relaxing activities I enjoy for rejuvenation.

Another thing I had wanted to share was part of the discussion at our last Liver Transplant Clinic Visit. While talking with the Transplant Social Worker, she pointed out that they wouldn’t be doing the Transplant at all if they didn’t ultimately think that it would improve Josiah’s quality of life. I had been dreading the post-op and beyond phase based on some of the transplant literature I’d read that talked about many of the likely challenges that occur post-transplant. This reading had left me with the impression (one nurse had even described trading one chronic disease for another) that there would likely be many ongoing challenges facing us post-trasplant but we would need to put up with all these issues in order to protect Josiah from the possibility of Liver Cancer.

The way the SW talked about the post-transplant quality of life she painted a much more positive (ultimate) picture. Since Josiah is not currently “liver sick” we are not dealing with major quality of life issues right now. Of course his very high blood pressure is an ongoinging concern (including the issue of potential damage to other organ systems thereby), which will hopefully receive some type of resolution post-transplant. But other than that it seemed like we were allowing the “carving up” of our son to “prevent” cancer, but to also lead to life-long challenges. Of course issues and complications are still lurking, but the SW’s words were encouraging and reassuring in a way I cannot adequately articulate at 3:30am.

Well, I need to get back to the room and see what’s happening and perhaps get some more “rest” while we wait!



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8am Monday July 29, 2013

Posted Jul 29, 2013 8:14am

We finally got some info when the doctors made rounds this morning, seeing Josiah briefly about 7:15am. They still do NOT have a time frame for the surgery. The liver has not yet been harvested and the very best case/earliest (unrealistic in my mind scenario) would be about 6 hours from their visit. The fact that they ordered breakfast for him makes it appear that 8 hours would be a better earliest time frame. That means surgery starting no earlier than 1:30pm (and I do not anticipate anything happening that quickly, the way things are currently going).

Josiah did not get his evening meds and when he finally fell asleep for a couple hours he was plagued with some pretty big kicking spasms in his legs (sometimes they would jolt nearly a foot off of the bed). One of his sleep disorders involves “periodic leg movements” (which may be related to “restless leg syndrome”) and I have observed twitching during his sleep cycles on occation. This jolting seemed especially intense and occurred almost every 10 seconds, at least while I was actively paying attention to it.

He takes Mirapex to help with the “periodic leg movements” and since he didn’t get that last night that lack may have contributed to this sleep disturbance. They do plan to order up most of his morning meds and perhaps some of his evening meds, but probably not more than one dose of those that are taken twice a day. There was conflicting info between the doctor and the nurse as to whether his Blood Pressure Meds would be given–the doctor planning on giving these meds, and since the doctors write the orders, that plan will likely prevail.

Fortunately both Mom and Josiah were able to get a few hours of sleep each. I was dozing a bit but no more than an hour total, and that with numerous awakenings to either interact with staff or upon hearing hall sounds (we ahve to keep the door open or the room is stifling hot so it’s not as quiet as one could hope). Hopefully I’m good for the short term than can cath some “Z’z” so as to be more functional closer to surgery time.

We spoke with Michael briefly after the info from the doctors was available. He’s currently weighing his options. I’ve encouraged him to consider going to work today as surgery might not even begin until after he could get here (if it happens at all). That way he could potentially stay through the night, especially if that’s when surgery is occurring, and take off tomorrow as a day to rest and/or assist here with Josiah. I have yet to speak with the Transplant Socail Worker to work out the accomodation situation, so until surgery we’ll continue to be camped out in Josiah’s room. No matter how tonight goes, I’m going to insist that my mom goes home to get some decent sleep. She needs to be better rested if she hopes to be able to spell me sometimes once we’re actually in the post-op course.

Well, Mom just ducked her head in this waiting room to say Josiah’s diet orders have finally come through from the doctor. He was really getting anxious in wanting to order up his food from the cafeteria, but we couldn’t place the order with food services until the doctor had put his order in the computer. Perhaps not getting his behavioral meds, short sleeping hours, the stress and uncertainty of waiting, the pending major procedure, and even the upheaval of not being in the more familiar (and family friendly) environment of Mott are combining to give him some extra challenges today. Please continue to keep him 9and us, etc.) in your prayers.

Since he’s waiting on me I’m sending this unedited so please excuse my primitive typing skills.

God’s Blessings Abound to You All, In Christ, Valerie


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11am-ish Monday

Posted Jul 29, 2013 11:36am

Josiah just finished taking a shower and is “comfortably” ensconced in one of the “sleeping” chairs. Mom went down to get some breakfast in the cafeteria, and I just finished half changing Josiah’s bed, so it would be nice after his shower.

The floor nurse finally gave him all the meds he should likely be getting until perhaps the evening. She also ran interference on some of our linen needs.

The Transplant Nurse and Transplant Social Worker stopped in to visit with us, and it was nice to see familiar faces that are well versed in Josiah’s particular situation. The SW is working on the accommodation and meal situation and cleared up the parking one, as well. She also made a referral to Child Life on Josiah’s behalf.

Not too long after their visit ended the Child Life Specialist from over in Mott came by bearing gifts for Josiah. He was pretty excited about a number of items in her goody bag and “played” for a while with some type of spinning light contraption. Once he’s rested he’ll likely get some good use of each of these thoughtful items.

He had an interesting conversation with the CLS, one part of which consisted of him asking her if she is married! There were a few times that she seemed pretty taken aback by his forthrightness, especially at the end when he asked her if she was a Christian and when she answered in the affirmative he blurted out “Praise the Lord!” All in all some of this was pretty fun to watch.

Mom was able to check in with Dad via her cell phone, and later she let Josiah and I use it to speak with Michael. He had slept poorly and was pretty keyed up by the delayed surgical scenario. He ended up not going in to work today and may be heading back here soon to continue the vigil. I was encouraging him to wait until later in the afternoon so as not to become too fatigued in the process even before surgery (ever) begins. After this brief update I hope to catch a bit of a catnap too and regain some degree of focus. I’ve been getting a bit loopy but am still in good spirits.

Thanks for the ongoing prayers as we continue to wait things out.

One “good” piece of info is that if at any time in the process they discover that the liver is not appropriate for Josiah they will let us know and send us home. Seems like that means to some degree that no news is good news.

Mom just popped her head in to say that I missed her call in the room from the cafeteria (she was willing to pick me up some breakfast). By stepping out to do this update I also missed the Family Resource Center person who was bringing by an I-Pad for Josiah to borrow. As we’d been told he’d be up in “5 minutes” and it was more than 30 before I left this seems to be somewhat hard to avoid…

Blessings to all and thanks for your ongoing kind thoughts, words,a nd prayers…Valerie

PS In some ways it seems like we’ve just spent the last 24+ hours spinning our wheels and are virtually in the exact same place we were after arrival yesterday. It’s kind of a wierd limbo land to traverse…


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11:40am postscript

Posted Jul 29, 2013 11:46am

Josiah expressed some interest in taking a walk about the hospital a bit after he’s slept some more and before the surgery (if it ever happens). As such I’m going to see how far they’ll let us off the unit and take him (via wheelchair if needed) and the IV unit, unless they’ll detach it again (as it’s currently only for hydration and not medication) to cruise about some.

I plan to offer a couple of choices, like going down to the Family Resource Center on 2 Mott (where we go after virtually every appointment) to give him some unwinding and computer time in a famiiliar environment. If this allowed I’ll sign into the Jazzman site so he can read so many of your encouraging words (or I can read them to him if he’s too fatigued/unfocussed).

Alternatively, if they won’t let us wander that far, hopefully one of these waiting room computers can be available where he can see tangibly how many people are holding him up to the Lord. Perhaps he can also be coaxed to speak again in his own voice…Later…


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4pm and still waiting…

Posted Jul 29, 2013 4:43pm

Well, at least Josiah has gotten some good sleep now!

Mom and I were on the verge of “resting” when we started a family dynamics discussion that kept me up and practically knocked her out! Before she could sleep or I could “cope” Josiah’s Supports Coordinator from the local Community Mental Health facility appeared in his room. We had been scheduled to meet with her at 1pm at our house, but that meeting was obviously pre-empted by yesterday’s and today’s “festivities”. We had a nice visit with her and she shared some good info with us….This also reminds me that Josiah is scheduled to see Neuro-Surgery tomorrow in clinic to get the results of his recent MRI of the brain, and since I’m not sure if surgery will happen or not I haven’t yet rescheduled–sigh…

While she was still visiting, the Child Life Specialist from down in the Family Resource Center appeared with our loaner I-Pad! Wow, bedside delivery. He was a very pleasant fellow and remembered Josiah from our many forays to the Family Resource Center. They are loaning us this I-Pad for 2 days, but it can easily be extended during Josiah’s in-patient stay. Apparently it comes pre-loaded with about 60 apps and one can use their own I-Tunes account and load various freebies onto it during the borrowing period. Hopefully this will be a nice diversion for Josiah (and maybe even occationally me). Since I’m pretty much a tecno-dino there will be some type of (likely steep) learning curve here. Perhaps when Dad gets here he can train us a bit since he is an I-Pad newbie…

Shortly after the I-Pad guy left the first Child Life Specialist returned bearing further gifts for Josiah. After her previous conversaion with him she had a good idea of things that would interest him and chose these items accordingly. She had found several history related books, a “surgery doll” with a Star Wars hospital gown and a small plastic “wand” that was perfectly sized to stand in for the doll’s “light saber” (Can’t wait for Nathaniel’s face…and comments!) She also found some type of Star Wars Lego Bionicle looking contraption containing 222 pieces, so that won’t be opened here, I hope. We had a truly delightful visit with her and it was a real treat for both Mom and I (though Josiah slept through it all–apparently she’d told peers of his “Are you married?” question, hmm).

We spoke with Michael and found out he’s been on a cooking rampage at home preparing probably nearly 20 pounds of meat for ongoing consumption. Remember we have 4 teenagers and some are serious carnivores. Hopefully this food prep will aide in making the next two weeks go more smoothly. After just getting off the phone with him again it looks like he and my dad will be coming back sometime later today and he’ll be bringing Mom and I plates of his chicken and rice creation (she’s already tired of cafeteria food after a day and a half…while I’m tired of the 5th floor that I haven’t left since yesterday morning yet).

Well, I’m becoiming somewhat verbally hyper in person and at the same time getting a bit loopy(er)…so hopefully yet again I can get a bit more sleep/rest before this situation here ramps up into high gear.

Gotta run..God Bless….V

Jazzman CarePage posting from this site:   http://www.carepages.com/carepages/JournalingForTheJazzman/updates/3553529

This post contains insights from a classmate of Brandon’s & Clarissa’s who at that time had been waiting for a Liver Transplant for herself for quite a few years…I hope to eventually get Josiah to read this specific post, or at least what Kara said, to see if he can relate to her perspective now that he is older & more communicative…

Kara’s Wisdom

Posted Jul 29, 2013 5:09pm

Kara Westra is a young lady who has been a classmate of Brandon or Clarissa over several years at Dearborn Christian School. She has been facing a very complicated and lengthy liver transplant situation and could surely use your prayers on her and her family’s behalf. They have been waiting more than 7 years for Kara’s Transplant, even though their original time frame had been estimated for about 5 years. Recently they were at her hospital prepping for her planned transplant when the liver was rejected by her surgeons. The Westra family really knows what we currently face.

The Westra’s have been keeping up a Care Page for Kara that chronicles much of her journey in this arena.

Last year around the time Josiah was on stand-by for the other liver I ended up reading Kara’s entire journey…what a testimony of grace and endurance, faith, joy, and love…

One of Kara’s postings was so profound and really moved me back when I first read it. In fact I so desired to experience Josiah having such a gift for communicating his part in this complex and challenging journey. So below as you read Kara’s words please lift her (and Josiah) to the Lord as He surely desires to use them mightily…even through suffering.

I recently received permission from Kara and her parents to copy and paste this very moving posting. You can find the original post at this link


Please visit Kara’s page and lift her and her family to the Lord too.

Here is Kara’s wisdom…

Below is the exact copy/paste of her posting…

If I could – I wouldn’t change it, because God’s plan is mighty!

Posted Apr 29, 2011 4:45pm

It’s me, Kara, again =] I’ve been thinking a lot lately about my liver disease and how it has become a part of my life. I thought I would share some of my thoughts with you all…
Before I had my liver disease and ulcerative colitis, I never ever would have wished for this situation in my life. But now I do have a liver disease and I do have ulcerative colitis. Over the years,of living with this,though, it has become a part of my life. Even though it’s hard, and I don’t always like it, God has shown me that this is all a part of His plan for me – every single detail – including the tests, IVs, and pokes. Not just the easy things in life are included in His plan, but also the hard things. I have met some really cool people through all of this and built relationships with others that wouldn’t be the same if none of this had happened. God has taught me so much through my disease, and I hope and pray that He will continue to do so. I ask that you would pray,too – that God would continue to work in my life and others through this situation, and that I would be a light for Christ even in the midst of this struggle. And now, I realize, that if I could change things and make it so that I never had a liver disease and I never had ulcerative colitis – that none of this had ever happened – I wouldn’t. I wouldn’t change it. That’s because God has shown me that this is part of His plan – His perfect plan, which is higher and better than anything we could know. God has a plan for you. All you need to do is trust Him and believe and live for Him, and know that Christ has carried your sin if you confess and repent. We may not always see the perfectness of His plan through the hard things we go through, but God has the bigger picture. I pray that you would trust in God’s plan for you – even when you can’t see it. That’s okay – you don’t need to always see it. You just need to trust in Him who does see it. God knows all things. Praise Him!
In Christ,


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Posted Jul 29, 2013 6:48pm

Well, the nurse came by about 15 minutes ago to say that Josiah can have a clear liquid diet and then go NPO (Nothing Passed Orally) again. When done “eating” the clear liquids it is then possible to be 4-6 hours before surgeries (as opposed to 6-8 after a regular diet), progress of sorts, I guess.

At this point if the surgery happens tonight it will not occur before 11pm and, at least from my perspective, not likely until after Midnight (if at all).

We’re hanging in there, but tired.

Michael and my dad just arrived and they have all sorts of energy! Mom and I will shortly head down to the cafeteria for some “dinner” since the chicken and rice didn’t escape Allen Park!


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2am, to be or not to be?

Posted Jul 29, 2013 7:20pm

Stepping away from Josiah’s room briefly to post the previous message meant I missed the nurse’s info. Apparently the doctor (surgeon?) paged her saying that Josiah is now tentatively scheduled for a 2am transplant.

If anything of interest develops in the meantime we’ll try to post it here. Now Michael will stay with Josiah while Mom, Dad, and I head down to the cafeteria to see if we can scare up something resembling dinner. It looks like I’ll step off of the 5th floor now for the first time in about 33 hours.

Thanks for the ongoing prayers. Perhaps this aspect of the journey will now be ending “soon”.

PS while getting some juice for Josiah while he awaits the arrival of his liquid diet dinner, I ran into a woman (literally) who was almost falling off of her feet as she attempted to make some survival coffee. She said that she had only slept about 17 hours in the last 6 days! When you’re in the hospital you are surrounded by such tremendous needs. Apparently we are currently camping out on the “transplant floor” and it is quite full…many families in upheaval here so may the Lord intervene in His Grace and Mercy on all of our behalfs.

Surgery Scenarios


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transporting to pre-op 2am

Posted Jul 30, 2013 1:59am

They are taking to Josiah to the pre-op area to prep for the Transplant now at 2am on Tuesday July 30, 2013….Please pray for him and us…


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3:10am Josiah to Surgery

Posted Jul 30, 2013 3:45am

They came to transport Josiah to the pre-op area around 2am. For the next hour or so numerous staff came in to touch base with him and us and complete the prep phase prior to the procedure.

At 3:10am they took him from the pre-op area to Surgery and we could no longer stay with him. We prayed with/for him and also for staff involved.

Josiah is/was pretty emotional during the prep time. He verbalized several times that he wanted to go home, crying quiet tears. Please pray that God would overshadow him with comfort, peace, joy, and healing.

One of the surgical team did say that doing a liver transplant is one of the highest risk surgeries that one can undergo, primarily due to the myriad complex vascular connections required. Given the nature of Josiah’s vascular atypicality his transplant will surely exceed the typical complexity of this procedure.

The staff were caring and competant and seemed very well prepared to address Josiah’s anticipated unique surgical course. They have already mapped out the blood vessel topography surrounding his liver and have primary and seemingly backup plans for how his new vascularization will be arranged. Please pray for God to guide the surgeons hands and the hearts and minds of all involved in this very complicated, exceedingly high-risk surgery.

We have been allowed to remain in the room Josiah had been staying in on the 5th floor, so have a measure of privacy and familiarity environmentally. Bill and Elaine went home around 9pm to get some rest and Michael and I were actually able to fall asleep for a couple of hours, as did Josiah, prior to heading for surgery. Please remember us in your prayers and thank you for you care and concern. Blessings, Valerie


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Random Meanderings

Posted Jul 30, 2013 5:46am

Before I can attempt further sleep it seemed helpful to upload these various random things lurking within…as I’m still processing…

The Transplant Surgeon said that “no news was good news” and that we may not have any updates of any kind for hours.

Part of the reason it took so long from our Phone Call to Surgery is that the donor was a very good source for multiple organs so way more coordination between numerous teams etc needed to occur…difficult for each of us waiting but overall beneficial for so many more people.

Josiah also has 2 inferior vena cava as well as 2 superior vena cava.

I signed the releases for them to use his tissues for educational and training purposes. Hopefully we’ll hear details based on direct examination of his extremely atypical liver, and maybe these will facilitate diagnosing potential genetic syndromes he may/maynot have…

[7/17 Note: I wonder if they did use his liver for training or education…& how could we find out about what might have been taught from his extremely atypical organ???]

Ran into another transplant family in the waiting area on the first floor before we returned to “our” room. The elderly lady was waiting on her husband’s kidney transplant. He had been listed for 6 years and due to his age she thought he might never receive a new organ. She’d already donated one of her kidneys to her brother some years back so she was sorrowful that she couldn’t donate one to her husband. She wondered if we might be recieving organs from the same donor–given they’s been called in at 10am today we really couldn’t tll…we may be transplant cousins. Andy is the recipient in case you want to also lift him in prayer. The wife and her son(?) were shocked to know our 17 year-old needed a transplant and quite compassionate.

Josiah really enjoyed using the I-Pad prior to surgery. He was thoroughly entertained watching some old 3Stooges video clips. You can’t help but crack up seeing/hearing Shemp and his screetchingly off-key vocal student carry on! Watching him I thought there really at that point was nothing he would enjoy more than watching an “old friend” and cracking up–Joy…

While in pre-op Josiah had a pretty hard time. He was concerned that he would end up in a coma. He needed some talking through reality vs the House, MD TV show version of medicine.

Although Josiah had previously planned on saying to surgical staff “It’s OK if I die because I’m ready to meet Jesus, so don’t feel bad” when he was thinking of surgery when faced with the actual even he was calling out “I want to go home” I am wrestling with how close to each other these statements are and that “going home” may be happening soon. Having no control of God’s plan here (or anywhere) it’s is painful to wrestle with the various outcomes. Even though caring for and championing Josiah has been an extreme challeng over his entire lifespan I do Not desire him to go home before his time. Praying for God’s grace and will here and desiring that His Will includes healing and restroing Josiah in this life as well as the one to come…

[7/17 Note: in re-reading the above paragraph I’m reminded even more profoundly of the Lord’s care for Josiah during the surgery.  In the vision of Heaven he had  while under anesthesia Josiah heard the Lord telling him that he was going home!]

Just writing that is making me pretty emotional so I’m going to wrap up without editing, so hopefully I can get some sleep too (Michael is currently “comfortably” ensconced in one of the fold out chairs in room 5440 of the University Hospital in the University of Michigan Hospital complex in Ann Arbor (for those who wated to know exactly where we are). We look to be able to stay in this room until they move Josiah to ICU where he should likely remain for 2-3 days before transferring to the 12th floor of U of M’s Mott Children’s Hospital in Ann Arbor.

Finally theres are prayers going u[ around the clock and across the nation (at least) on Josiah’s behalf. Besides throughout the state of Michigan various members of our support team have heard from prayer warriors in Arizona, Tennessee, Colorado, California, Maine, Massachusetts, Oklahoma, Minnesota, Ohio, Texas,and North Carolina.

Please keep those prayers coming and we’ll update with info as it bedomes available.

In Christ, Valerie


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5:50am Incision

Posted Jul 30, 2013 7:46am

Around 6am the floor nurse popped into the room we’re hanging out in to say that she had received info that they had begun Josiah’s surgical incision around 5:50am. She said it’s quite typical for the first couple hours to involve placing the various lines (venous and arterial) in preparation for the actual surgical procedure. She then thought that the actual surgical time was often about 6 hours after that. So they took about 2 3/4 hours for the line (and whatever other) prep for Josiah…don’t know if that might actually lengthen the projected surgical time.

We are getting some degree of rest in those chairs but rather fitfully and uncomfortably. I’ve had a killer headache ever since they woke us around 2am to take Josiah down for the pre-op phase. I’m also intermittently emotional during this waiting process–something I’m never good at even at the best of times. Michael is being a rock and handling things well so far.

The nurse thought there might be further news in about 2 hours from her visit, so there may be another update shortly. I would have mentioned this info sooner, but I’d just returned to the room from a previous posting, drink replenishment run, and restroom break and was hoping to catch minor sleep in the meantime. I picked up the I-Pad to attempt to use it for posting but have no idea how to access the web, or even get off the site it was currently set at (CNN) so couldn’t post from room 5440 yet…sigh.

We are still hanging in there but quite tired…Regards, V


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Further Thoughts, on the I-Pad

Posted Jul 30, 2013 11:18am

Michael was awake when I got back to the room and helped me to access CarePages on the I-Pad! Therefore this message is being sent via that borrowed device.

Sspeaking with Andy’s wife last night, she brought up the issue of the donor. She wondered if Josiah was receiving a donated lobe from a living donor or a “cadaver” (her word) donor. I said he needed a deceased donor for the whole liver and blood vessels. she then raised the issue of thanking the donor’s family. we talked a bit about Gift of Life and our mutual desire to thank the donor family. It was reassuring to meet another transplant family that also wrestles with the sensitivity to the loss of life the donor’s family experiences. Ztransplant isn’t easy to face on any side of the equation.

In talking with the nurse this morning, she mentioned the process of tying off all the blood vessels to/from the liver prior to removing the recipient’s liver and transplanting the donated one. this makes me think that this aspect of Josiah’s transplant will likely take longer than typical. This is because of his atypical vascularization and “collateral venous perfusion” which to my mind suggests that he has a number of smaller blood vessels feeding into the liver instead of the usual Portal Vein.

Please pray that All attached blod vessels will be found and clamped successfully…


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Surgery Almost Done!!!

Posted Jul 30, 2013 11:33am

Michael and I have moved camp to the Surgical ICU (the 5th floor was expecting and influx of 12 patients already due to a heavy surgical load today) in expectation of Josiah’s arrival post-Transplant!

We had a brief tour of the SICU and met a number of staff. The approach here is definitely Family Centered Care. We are waiting in the ICU room prior to Josiah’s transfer. Once he arrives we’ll need to step out for about 15 minutes while they get things settled but then can remain bedside.

For interested parties we are near the 2 family waiting rooms off of the 5th floor West Elevators in the University Hospital…he is going to bed 5814 in the SICU, I believe.

Apparently surgery is going very well, per the ICU nurse–we have yet to get any direct reports from the doctor(s). They did NOT have to use any blood products, which is not the typical case!!! God is so good in that even though Josiah may have had a higher than “average” chance of bleeding challenges no transfusions were necessary.

The prayers of the righteous avail much! Thanks so much for keeping him and us before the Father.

Please pray that he will be able to be extubated quickly and well able to breath on his own and that all remaining aspects of the surgery will contine to go well.

God Bless You All,


After Surgery & Beyond…


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Josiah’s In the ICU now!

Posted Jul 30, 2013 1:21pm

Hey everyone Josiah was just moved up to the ICU around 12:30pm. He looks great and the Transplant was a Great Success! He is currently still paralyzed via meds but once they wear off around 1:30pm they will begin to attempt extubation so that he will hopefully be able to breathe on his own.

His surgical site looks great! His blood gasses are doing remarkably well. The ICU Nurse said that he is already doing extraordinarily well based on virtually all measures of his status!!!

Thank you so much for the ongoing prayers, they are effective!

We spoke at some length with the surgeon about the course of the surgery and what to anticipate. From a percentage standpoint he gave this surgery a 95% success rate (I asked for the grading scale for comprehension’s sake). The main concern is the possible complication of clotting in the hepatic artery in particular. Josiah, not being liver sick prior to the surgery, had normal blood clotting, which is somewhat of a problem for liver transplant (most liver recipients being sick have compromised clotting making it less likely that they’ll get clots). They gave him an aspiran to reduce the clotting, but plan to keep a close eye on the vascularizaion in the coming days via Ultrasound and bloodwork. There remains the possibility that a clot could form and they would need to re-open him at the existing incision site to address this. Please pray that there will be no clots forming.

The donor liver had a somewhat atypical hepatic artery, a type that occurs in about 20% of people. Becuase of this the clotting issue is of somewhat greater concern. It figures that Josiah would exchange his Extremely Atypical Portal Vein for a Somewhat Atypical Hepatic Artery!

One of the main things positively that may result from this transplant would be the cleasing of some possible Neurotoxicity of the Brain. It is possible that now that his blood should be being filtered in a more normal manner that his tissues could be cleased from toxins that may have been building up over the years. He is still young enough to be able to realize such benefits. Please pray that all toxins will be flushed from his system and that this will result in positive and beneficial changes for him. This could mean some degree of cognitive improvement and also the possibility of some type of personality changes. Please lift all these things to the Lord for his will to be done anad for Josiah to receive the greatest benefits possible here…to God’s Glory!

Also his high blood pressure may undergo some type of improvement. Please pay for resolution of this HBP condition and for God’s Healing Power to be at work amongst all of Josiah’s organs that may have thus far sustained some type of damage over the years.

Please also pray for the medication course that he will respond well to the necessary meds, that there will be no/minimum side effects, and that e can be weaned as quikcly as possible from ALL Medicines eventually. Wouldn’t it be amazing if he ultimately had to take no further High Blood Pressure meds and that he could become one of the successful liver transplant recipients who is able to be completely weaned from ALL post-transplant meds. If this scenario ever happens it could take years…but God is bigger than human time tables, please pray for tangible results here too!

Well, I need to get back to the room. Michael and I had a very special and amotional time of sharing while waiting in room 5814 for our son’s return. Please continue to lift our family in prayer as we walk this complicated and intese path. We so appreciate your love, encouragement, kind wors, support, and prayers. Be patient with us getting back in touch with you individually as we are somewhat overwhelmed currently.

Rejoicing in Christ’s Love, Healing, and Work in Josiah’s, and our, life! V


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Josiah’s 3pm Status

Posted Jul 30, 2013 3:22pm

I’m losing track of the details of time, but Josiah woke up from heavy sedation once they turned the Propofol (sp?) general anesthesia off. He became pretty uncomfortable with the breathing tube in his throat and the NG (naso-gastric) tube through his nose.

Prior to awakening his incision site looked amazing, flat, even, and no visible stitches or stapling. After his distress, Michael noticed a blood spot on Josiah’s hospital gown (commenting that he was a hunter and knows about following blood trails!). The staff checked the incision site and there was a place where blood was slowly seeping through and the general area around the incision, especially above the line had a pretty good degree of swelling and even some bruising. I saw his BP at at least 213 during the distress, it may have been higher. Anyway, staff is keeping an eye on this swelling and managing his BP and pain via medication. Even with the incision site’s changed appearance staff still thinks the site looks great and that Josiah is doing amazingly well. The doctor most recently talking with us also works in Cardiology and he explained that abdominal incisions usually involve way more swelling than those for cardiac procedures. This info helps us “normalize” what we’re experiencing along with Josiah. They’ll keep tabs and let us know of any issues.

They are soon to do both chest and abdominal X-rays, which may be routine post liver transplant, but I’m not sure. They are also to do Ultrasound with Doppler imaging to view the vessels and look for any clotting or other concerns. These images can be accessed via computer so if we are not bedside to be involved they can show us things later.

Overall Josiah is doing remarkably well. He even croaked out that he wanted me to stop talking, which pleased Michael to no end (and who knows how many others in the room!)

Mom and Dad arrived in time to participate in Josiah’s awakening and extubation. They are staying bedside with Josiah now so that Michael and I can take a walk and a break.

Before coming to the ICU the Transplant Social Worker called to say that she was able to arrange hotel accommodations for us starting tonight through Monday, so whenever I’m finally ready to get some real rest I can crash there, clean up, and come back somewhat refreshed. I kind of like the outfit I’m wearing, but since it’s been a non-stop companion since 9am Sunday we’re ready to take a break from each other!

Nathaniel is planning on visiting later and if Brandon and Clarissa can’t come today Michael plans to bring them tomorrow after work probably.

Please lift Josiah in your prayers…and thank you for sharing this journey with us as you are able.




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Neurosurgery Interlude

Posted Jul 30, 2013 8:56pm

At 4pm today Josiah was scheduled to see the Neurosurgeon who did his brain tumor surgery about 2 years ago and the associated endocrinologist. I hadn’t rescheduled the appointment yesterday because I didn’t know if he wouldn’t keep it (i.e. if that surgery didn’t happen and we were already at the hospital anyway today Josiah and I would have hung out likely in the Family Resource Center then gone to the appt.)

Anyway, just when Michael and I were heading out, after I’d posted the previous update, upon checking the clock I realized it was about 3:30pm so I might as well head there in person instead of just phoning. Michael didn’t want to “follow me around” so he headed to the cafeteria where I hoped to meet him after taking care of the appt and icing the cooler in my van in the parking structure–hopefully in about a half an hour.

When I got to the Neurosurgery check-in desk they didn’t know if we should automatically reschedule (nor could they tell me if the MRI of the brain was adequate or if it would need to be redone) and the Neurosurgeon was in another appt so his nurse was waiting to check with him. In the meantime I availed myself of the courtesy phone in the waiting area to take care of some mileage re-imbursement business associated with one of Josiah’s insurances. While on this phone call the Neurosurgery nurse came to get me to see the Doctor…so mileage business partially still pends until perhaps tomorrow….

The Neurosurgeon sat down with me in the usual exam room we’ve seen him in and gave the briefest report. Apparently the MRI of the brain was somewhat blurry due to Josiah’s moving around during the procedure but the Radiologist had been able to see the pituitary site sufficiently to say it didn’t look as if the tumor had regrown! He still wanted Josiah to be seen again in two years and as he was going into a semi-retirement eh couldn’t guarantee that he would be the one to see him then. He also said there was no need to currently check with the Endocrinologist.

Then he wanted me to update him on Josiah’s Liver Transplant situation. He had received an email (presumably from the Transplant Nurse since I’d requested that she do this) of Josiahs’s hospitalization and then pending transplant. Since he’d received this email hopefully the other providers caring for Josiah across numerous disciplines were also informed, as many of them had asked me to let them know when the transplant was happening….

Anyway, the bottom line is that the Neurosurgeon and I were able to succinctly discuss the transplant status which was great symmetry for both of us. This Doctor had been part of quite a few discussions with me and with extended hospital personnell for many months when both the Brain Tumor and Liver Masses had been simultaneously discovered. how amazing, and just like God, to have us scheduled to see a Doctor who is only in house a few times a month on the very date and time when we could best discuss the apparantly positive Transplant progress!

As a silly icing on the cake at the end of the visit, which was unofficial as he hadn’t seen the patient, I asked the check in staff for time to retrieve the mileage re-imbursement form I’d left in the ICU room thinking there would be no actual appointemtn. He was to be there for about another half hour so I had to hoof it back to the ICU to get the form and get his signature. This gave me some much needed exercise (and contributed to my ongoing sore feet) and meant and intact reimbursement signature. I struck up a playful conversation with him while catching my breath and was leaving just exactly as Micael was meeting Nathaniel, who had just arrived at the hospital at that exact moment!

Further silly, yet helpful (to me) details: this meant both Michael and Nathaniel would hustle with me to the Family Resource Center, which was closing in mere minutes. I’d wanted them to see this location so they’d be able to visualize where Josiah and I usually camp out after his U of M visits (since this info was sorely missing from their, and your, lives!). It also meant that I could get some needed ice for the van abandonned cooler. In fact, Michael had brought some items he was planning to put in his car so he took the ice and handled that as our vehicles were just 10 feet apart (another minor miracle and convenience for us). This gave Nathaniel and I a few minutes together on the walk to the SICU so he could see for himself that there was no sleep-deprevation hyperactivity/verbosity inflicting him mother, and by extension everyone else…

Botton Line…No Brain Tumor return thus far and check this again in 2 years…and that’s a relief so we don’t have to re-step-up that arena yet–if ever…thanks Lord for this kindness and weight delayed!


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Cardiac Complexities

Posted Jul 30, 2013 9:37pm

Just as Nathaniel, Michael, Mom, and Dad were packing up to head out for the night the evening rounds of doctors stopped outside of Josiah’s ICU room. Mom and I drew near and heard the majority of their discussion and had the chance to ask questions.

One thing mentioned was the possibility of some type of “shunt” existing. Since I didn’t get the jargon around this word (and didn’t get to ask Mom yet) I asked for clarification. The bottom line is that they are seeing some degree of difference in either oxygenation of blood and/or the way the capillaries refill between sides or extremities. Frankly I didn’t process all the details.

There was some speculation about the possibility of the intermixing of oxygenated and unoxygenated blood. They postulated the continuing existence of an ASD (Atrial Septal Defect). Josiah was known/presumed to have and ASD in infancy but it wasn’t concerning enough to warrent surgery, even when they did his VSD (Ventricular Septal Defect) gore tex patch repair back in 1996–our introducion to the ongoing love affair with U of M Hospitals!

This led to me getting to play dr. Val (I don’t warrent the capitalization here) for the briefest of times. For those that don’t know and/or care during my Undergraduate existance I was a Pre-Med student but with a Major of Biomedical Chemistry by the time my senior year came around I was very tired of tunnel-vision focus on the hard sciences within my degree. I actually only was able to take like two elective courses as a senior (the Pre-Med course at my college was very intensive and structured with minimal opportunity to branch out) and I chose ones in the Psychology field–both of which I thoroughly enjoyed.

Anyway, by the time I got my BS Degree I was so sick of straight science and excited by Pxychology that I was contemplating doing a fifth year of Colleg to get a second degree in Psychology. However, when reading up on the enrollment paperwork from my University I found out they were offering a new degree in the School of Graduate Theology. Ultimately it was a choice of one more year for a BS in Psych or 2 more years for an MA in Christian Counseling. I chode the Counseling route and became the only one in the Seminary there that entered with MCAT (Medical College Admissions Test) scored instead of the GRE (Graduate Record Examination).

The tremendous irony here is that by the time I got my BS I was so sick of science that I pretty much didn’t want to have anything to do with Med School, because I wanted to “have a life”, and didn’t relish the nearly decade of education and training required in Medicine. What ended up happening once Josiah came along is that I had a virtual medical degree without the paycheck and without “the life” i so selfishly craved in my relative youth.

So today I got to chime in on the rounds with details of both Josiahs Open Heart Surgeries, at staff requests, and was part of their discussions in the most minor of ways. It was a treat but didn’t leave any level of regret for my life choices. In fact the lovely young female doctor who was giving the verbal report to the remainder of the team pulled me aside to share how she envied what I had saying that she would be going home to her plant and someday she would be going home to her cat. She seemed wistful for what I have (that she saw then) loving and Godly parents, 2 amazing sons (she could see), and such a wonderful husband that there are no words to do justice to the caliber of man he is. No one looking at her and me with physical eyes only would think the one experiencing envy was her!

So due to this questioning and discussion the apparent senior doctor of these rounds reccommended an echocardiogram with a “bubble test”. Since Josiah had had an echo-cardiogram earlier this year this doctor said that we could have Cardiology do this bubble test the next time he needs the echo-cardiogram. I asked if they would put this reccommendation in writing in his chart because I didn’t want to be the potential weak link in getting this conveyed to Cardiology. At that point I believe this doctor decided to order this test to be done soon (while he’s in the ICU), though I may have misunderstood.

If this test is done soon, hopefully the findings will help inform Josiah’s current treatment and provide clues to the ongoing management of his exceedingly complex medical (and beyond) needs. Please pray for any further testing to reveal what issues are underlying his various conditions and for wisdom and creative problem-solving skills amongst decision-makers so more of the puzzle pieces of the chaos of Josiah’s life can shed light on the bigger picture…as you continue to lift Josiah to the Great Physician…Blesings, V


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Primary Doctor Call

Posted Jul 30, 2013 10:05pm

Just as Michael was heading his feet out the ICU door on his way home his cell phone rang with a call from Josiah’s Primary Care Physician who runs the Program/Center for Exceptional Families. Michael wanted me to take the call so he ended up waiting still longer.

This doctor was wanting a direct family update on what’s happening surrounding Josiah’s Transplant situation. He is/was her only Transplant patient in her practice. She had said that most physicians Never have a Transplant patient and having even one in your career is very unusual (obviously for disciplines outside of transplant arenas). She’s also the one that said that Josiah is the most medically complicated child in her practice, I think.

Anyway, we had a good conversation and I was able to have Josiah’s nurse also speak with her to give her the accurate medical status.

We were supposed to see one of her associates tomorrow to pick up Josiah’s foot “orthotics” and she said that she would tell this colleague we wouldn’t be able to make it. This is another burden and detail off our/my shoulders, which is a relief.

Thank you, Lord, for Godly and caring providers…we remain blessed!


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Grandma’s a Nurse, not just on TV

Posted Jul 30, 2013 10:17pm

Another special detail was how Grandma/Elaine was interacting with Josiah during some discomfort. He was having a hard time coughing up phlegm, etc. since this was very painful and his incision site follows his diaphragm/ribline for about a foot. Grandma knew a technique from her nursing experience whereby the patient holds a pillow across their abdomen and presses it inward during a cough to ease some of the discomfort. She was helping him hold the pillow properly and talking him through the steps in the process until he seemed able to do so independently.

Also Mom and Dad were there when Josiah was given the bolus (I think) which allows him to dispense morphine on his own schedule (limited by machine so you cannot overmedicate). Josiah was experiencing some weakness and perhaps partially lingering paralysis so he was having a hard time squeezing the bolus ball adequately to dose himself. I believe Nurse Elaine was helpful to him in this arena too.

Another thing Josiah is experiencing is a potential beginning bedsore probably near/on his buttocks, where the cocyx ends. The nurse applied some specialized bandage/sticker/padding? to surround the area and help keep that spot from too much pressure in the bed.

Since the incision goes from the mid-front left to the right side of the ribcage it must be pretty hard to lay anywhere but on his back or back-left angled. Please pray that there will be no further bedsores and that Josiah can be kept as comfortble as possible…Thanks so much, V


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This post is about needs happening with another family we encountered.  I chose to post it on the Transplant Anniversary page because it represents another aspect of what we were facing then…being surrounded by other families going through intense & frightening situations even as we each focused on our own “crisis”…

Prayer Request for Kenneth in ICU

Posted Jul 30, 2013 10:42pm

While in one of the waiting rooms typing (ad nauseum?) I’ve been able to converse a bit with Malika. Her husband Kenneth has been here for a while now facing some difficult challenges. He has been diagnosed with “Lupus” elsewhere and it’s possible this diagnosis is inaccurate or at a minimum incomplete. They are currently looking into genetic testing then plan to examine environmental concerns to pinpoint what is truly going on with him.

He has been having such significant lung challenges that there has been talk of a lung transplant sometime. Currently there is difficulty in weaning Kenneth off the Ventilator/Respirator? and they are considering doing a Tracheostomy/otomy? so that he can be able to speak.

Additionally their young daughter is here hoping to visit with her father but he is resistant to this.

Malika needs comfort, peace, strength, and wisdom for the many decisions before her. Kenneth needs healing, proper diagnosis and treatment, and to be able to converse and visit with various family and loved ones…he may also need to more actively participate in decisions regarding his care. Doctors and other staff need wisdom and clarity of focus as they work to define the current and underlying medical issues and to convey plans and options to both Malika and Kenneth.

This family is going through a very difficult time (as are so many here on the fifth floor of the University Hospital in Ann Arbor). Please lift them up to the Lord for his loving care and God guides you. Thanks you so much for your prayers on their and our behalf…Valerie

PS Malika read and approved this message before the posting!


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Hospital Night for Val

Posted Jul 30, 2013 10:52pm

When everyone else was getting ready to leave Josiah was getting sad and tearful at the idea of being alone, without family tonight. He also really wanted Brandon to come and visit him today. Anyway, I’m planning on “sleeping” in his ICU room tonight and being there for him as best as I can. Mom is planning to come sometime tomorrow morning and then I’ll plan to leave for some “real” sleep at the hotel, as long as I’ve been here for the 6am-ish rounds of the Transplant team and the 8-9am-ish rounds of the ICU team…Yee Ha!

Brandon and Clarissa were apparently spending the day at Camp Dearborn with church friends and Michael was unable to reach them via (their friend’s) cell phone. Otherwise we would have seen about them visiting tonight. Michael plans to return sometime tomorrow evening and to bring Brandon and Clarissa along then.

By the way, if Josiah continues to do so well, there is a possibility that they will move him over to Mott sometime tomorrow, but they’ll need to have his blood pressure adequately controlled first….Goodnight, theoretically at least!


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Wednesday July 31, 2013 12:30am

Posted Jul 31, 2013 1:02am

After a long time in one of the family waiting room to type further updates on their computer (easier for me to type on that the loaner I-Pad) I finally got back into Josiah’s ICU room. He had been sleeping previously when I’d popped in before the type-fest. Now he was intermittently awake and interacting with me and the Nurse.

He is still having some degree of difficulty with pain, but not too bad as he can sleep and not complain unless he chooses to. He really Hates the NG tube and wants it out Now. He’s also bothered by some of the “lines” especially the complex one in his neck, perhaps the arterial line? This causes both some pain and perhaps psych discomfort. He really wants to be able to drink ASAP. He also became tearful talking about wanting to be in the New Mott Hospital soon. Most of these things he asked for specific prayer especially the NG tube and moving to Mott both tomorrow, and drinking from a straw very soon.

His blood pressure rose while talking about his wants and discomforts, for it had been hovering in the 130s earlier. Apparently most liver transplant recipients loose sufficient blood (and possibly other reasons too) to be concerned with too low of BP post-op. Josiah’s on the opposite end of the spectrum–go figure! The sooner they figure out the best BP drug cocktail for him (both now and for the home regimen), the sooner he can move off the ICU.

I asked about the tests that have been done so far. The Ultrasound with Doppler Studies was ordered to be read STAT. The fact that no report is in the coputer is a strong indicator that there are no major concerns in this arena. The nurse said they don’t wait around at all with blood clot concerns but even rush patients immediately into the OR to address things.

The nurse did check and an Echocardiogram with a “Bubble Study” was ordered for tomorrow. She wasn’t wuite sure what the “Bubble Study” entailed but thought it involved injecting something into the blood vessel(s) to observe the flow of blood, or something. The results of this Ech may add to the growing picture of Josiah’s unique Cardiac Complexities.

Josiah expressed concern with wanting to take his Paxil medication. He seems to recognize that it does assist him in managing his anxiety to some degree. One of the night doctors came into the room to discuss with me why they wouldn’t be giving psych-type meds to Josiah tonight, but may be adding them back in tomorrwo. Even without this chemical assist Josiah was able to calm down and once relaxed his BPs would follow suit.

Josiah is doing a good job of speaking up for himself already, perhaps more so than I’ve ever seen, especially under such extreme conditions. Could this be dawning evidence of cleansing of toxicities already occurring with associated cognitive and emotional supporting evidence? Only God knows…and chooses to show…

He asked several times for his mouth to be swabbed as he relly craved a drink. He also, surprisingly to me, requested that staff would assist him with turning more onto his right side, seemingly to be laying somewhat on the end of and most swollen portion of his incision.

I’m really fading pretty hard now (for no inown reson…!) so need to wrap this up. The night doc said he was doing great. He said most liver transplant patients at this point still have th breathing tube in and are likely not even conscious. Also he pointed to a bolood products charting written on th door glass showing what type of blood items they were anticipating using on Josiah. It is extremely remarkable that no blood has been neede thus far. In fact, it’s unlikely now that he would need blood items and th attending doctor gave orders, I beleive, to the effect that anyone wanting to give Josiah blood products would have to clear it with him first. WE ALL KNOW WHOSE BLOOD JOSIAH IS UNDER!!!

Things are looking quite good for Josiah to be moved off the ICU tomorrow, but it’s not clear if it would be to Mott or to a Step-Down Unit her in the University Hospital.

“Sleep” is calling…perhaps we’ll finally have a chat!


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This post is referencing me looking at the Photo Gallery that is on the JournalingfortheJazzman page here   http://www.carepages.com/carepages/JournalingForTheJazzman/photos 

Note Before Bed

Posted Jul 31, 2013 1:21am

Missing my family lead to checking out the photo gallery and reading any comments attached. Great to hear from Curtis, all those comments are now playing in your voice in my head. You crack me up, and I’m so glad you’re coming along a bit for the Jazzman’s Wild Ride.

Mom and I sang Curtis’ little I-D, I-D song to Josiah before she and Dad went home the other night (and in front of the nurse’s aide too). It really brought back great memories of that Cottage trip with all in attendance. Dad said Josiah practically had tears in his eyes and was very moved by your lyrics–not our singing.

Thanks so much for the gift of laughter…and love!!!


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Random Ramblings, Wed 5:30am

Posted Jul 31, 2013 5:52am

I might have gotten close to three hours of some degree of sleep in the bedside fold-out sleep chair. The nurse brought in a warm blanket for me sometime during that sleep phase thinking I was freezing.

Contrary to popular misconception, the hospital TP is indeed created of sandpaper and other helpful substances!

I forgot to put on my “granny glasses” cheaters so am not seeing this type too well so am less likely to catch my numerous errors….obviously many of the recent postings have not undergone much, if any, editing.

Josiah was awake earlier wanting to turned onto his left side somewhat, and this turning process involves at least two staff working in coordination.

Full male beards “contained” into a ponytail style should Not be making a fashion comeback unless you’re in a Capital One Credit Card Viking commercial!

Abberrant bow-ties, usually associated with older nerdy type men and surprisingly tolerable on young, handsome, male hospital staff. A winning smile and bright eyes can overcome many a seemingly fashion faux pas!

Josiah is currenlty using the nasal cannula for “2 Lieters of Oxygen” ahving formerly been on room air via nasal cannula and formerly having been cannula free at some point. At night wth no cannula he was showing O3 satuarations around 90% which is why they put him back on the O2 for a while.

Josiah has been feeling somewhat hot to my touch and the Nurse said his temp was 38.2C? and they don’t treat unless it’s 38.4C or so. This means he’s running a temp in the101F+ reange, but this is quite typical post-surgery.

I request the Nurse add the info of including Josiah’s Primary Care Physician, the onle who’d called on Michael’s cell phone yesterday, in any discussions of what ADHD and/or possible behavioral meds he might go on. He has been taking Metadate CD 20mg for ADHD and Paxil liquid suspention, 3mls ordered but I may short this to sometimes as little as 2.5m.. He also had been on Strattera 18mg, weaned to 10mg before discontinuing it (to see if this helped with his BP numbers, which it didn’t seem too) and ultimately adding in Lisiopril several weeks ago to attempt to manage his BPs. His Previous Paxil and Stratterra doses had been stable over quite a few years, since gradeschool, and adding in Metadate a few years ago actually ficiltated his processing accuracy, but not his speed…perhaps all these things meds and their underlying treatment issues can be in some degree of fulx because of the flushing of Neurgogtoxicities? Who knew that Liever Taransplant could become a treatment of chicke to help lessen Autism, ADHA, Depression, Anxiety, and Obsessive-Compulsive Disorder–all conditions for which the above meds were orignnally perscrbed!–last sentende tongue-in-cheek, of course.

Josiah still badly wants that tube out of his nose and to be able to drink. Both of those options remain on the table today. He will be awakend when/if the tube removal occurs.

Transplant Teams should be rounding soon, but even thought the surse said she’d get me I better get back soon, jsut in case.

Night doctors reiterating to me the importance of self-car induced hygeine paranoia is fun to wrestle with. The nurse assures me that me and my long-term friend outfit smell “just like clean laundry”11 Hmm.

Brushing teeth is heavenly if one waits long enough!

Washing one’s face in a publec hospital restroom shared by staff and 5th florr families/visitors (one of maybe 4 such bathrooms on the entire floor) is much enhanced with the paper towel dispenser in empty!

Husbands need breaks from round the clock bedside hopital care and wainging…they also need breaks from wives that get overly chatty upon extremem fatigue…perhaps other family members and readers need such breaks too!

Thanks for your continueing Prayer Support for Josiah and other people here on University Hospital’s 5th floor “Vacation Station”!

Blessings in Christ,



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[7/17 This episode related to Pee & a Foley Catheter seems particularly potent given Josiah’s current catheter status for the next week & a half…]

Peeing Freely

Posted Jul 31, 2013 7:23am

Josiah just went through a rough experience in that the tube from his Foley Catheter became disconnected and leaked urine all over his bed around his hips and thighs. This led the nurse and assistant to do numerous move to clean Josiah and his bedding up, all without him not being removed from the bed.

There were numerous rollings from side to side and tugging and tucking of various sheets and blankets and pillows. All this motion was causing him enough pain that he was asking for his “bolus”? button they’d set aside, so he could dose himself with morphine. Also his BP was spiking over 200 during these maneuvers. He wanted me to stay in the room during these proceedings (I’d offered to step out as they were cleaning up his naked buttocks and genetalia) and held his hand and talked through the steps with him as best as possible.

Just as they were finalizing the cleanup process the Ultrasound Technician returned to do that imaging again, and he wasn’t real happy about that. They’d finally got him positioned relatively comfortably and he thought he’d have to move. The tech said he could stay in the current position (which was head elevated near a 45o angle and two pillows under his knees and one behind his head). He also didn’t need to interact with the tech so could even drift off to sleep if he wanted. She told him that the warm ultrasound jelly (pregnant women of the world unite at the descrimination here) mihgt maake it easoer for him to sleep He was OK with me to step out for the updating hree at this point

He was getting chilled as they changed his bedding and actually shaking, i thought it could have been in pain…He seemed to calm down somewhat and his BP was then in the 180s, after having been in the 130s while sleeping. Also he seemed to experience more discomfort when laying down flat as opposed to having his head raised.

He still strongly wants to get the Tube out of his nose and to be able to drink stuff. He was allowed some sponge swabbing in his mouth and catully held the wand himself during the final bed cleaning phase. This distraction may have helped calm him. Then the nurse gave him a disposable creamer size shot of some banana flavored med to combat/prevent Thrush. He had to swish it around his mouth then swallow followed by a sponge swabbing within his mouth by the nurse to ensure the med was distributed well. He liked the flavor and probably appreciated getting to swallow Anything.

At this point Josiah wants prayer for popsicles! The nurse said that since that’s on the clear liquid diet list, once he’s had the tube removed and been cleared for liquids orally then perhaps this prayer could be easily answered….So Please Pray for Popsicles!!!


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Speaking with Staff

Posted Jul 31, 2013 7:50am

The nurse had checked the computer for me earlier and said that they had ordered the Echocardiogram with “Bubble Study” but it hadn’t been scheduled yet. If it had been ordered STAT it would have happened last night. I asked about this from the two resident/following doctors that were doing a 1-1 report outside of J’s room, perhaps for a shift change. The Male doc reporting was in the evening rounds during the “possible shunt” discussion. He clarified this issue to the Female doc taking his report when I asked some questions regarding the Echocardiogram (which he didn’t think was ordered for today?). His elaboration to his colleague indicated that the info leading to the shunt speculation came from the Anesthesiologist based on factors he noted surrounding Josiah’s surgical anesthesia and response…I need to get to medical records and request the complete chart that’s been generated since my last such request from more than a year ago so I can read the complete details of this issues and continue to raise related matters to various theoretically appropriate practitioners…somewhat of the dog with a bone mindset for me…

I’d also discussed with the Nurse adding a note to his chart with the contact info for Josiah’s Primary Care Doc to perhaps be consulted whenever they began looking into re-starting behavioral related meds. She has been the only prescribing physician for this arena and has been following Josiah since he was perhaps a year old; we even saw her while we still lived in Gaylord during or numerous Down-State trips for Josiah’s specialty care then. I don’t think there is Any other doctor who has workedd with Josiah as long (if you don’t count the hearts surgeon who saw him in 1996 and 2000 and remains in the wings when/if Josiah requires further heart surgery). Id did metion the Primary doc to the Trnasplant Team when they rounded, but it didn’t seem that they were likely to include her in any discussions.

I also raised the issue of anxiety being more of a problem with his BP currently than is the pain factor. I asked the nurse to provide insite her since we both observed his BP spikes during the night. She concurred and elaborated on her impression that the BP spikes seemed much more associated with Anxiety than with pain.

This makes me wonder if I should, and I think now I’ll ask to speak to whatever doc is currently in charge of his care on this particular shift for this conversaion regarding his anxiety and meds. Prior to taking Paxil (and Stratterra) Josiah had been on a form of Wellbutrin XR (or some other two lettered appendange) and he’d tolerated it quite well. However after being on it for a year or so, if memory serves, he stared developing a “facial tic” where by he would randomly and frequently purse his lips then somewhat slowly open his mouth wide (this was distressing for me to see after having worked in a Psych Hospital way back and observed long-term psych med patients with similar behavioral “tells”). Because of this “tic” the Primary Doc put him on Stratterra,a nd the “tic” dissappeared. However the behavioral/emotional issues were more prevalent so Paxil was added to ease these conditions. Ironically, now that the Stratterra has been D/C’d, he’s back to having a very similar “tic” that put him on Stratterra in the first place. Given all that, I wonder if Wellbutrin, or something similar could now be tried in place of the Paxil and maybe even the Metadate–a form of Ritalin. Hopefully it doesn’t hurt to ask, nor to be proactive…

As a side note, the Viking assisting the nurse in cleaning up the bedding and turning Josiah mentioned that he had a friend/relative who had been on Paxil and had experieced difficulties in “coming down off of it”.

Well I better get back to Josiah ans the ICU rounds should be coming soon and I hope to hear/participate in that as well.

By the way, the same male nurse he had last night should be coming on, perhaps is already theyre, and when the Night Nurse told Josiah about him he said “Good because I really like him”…Small Favors…


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I-Pad Update

Posted Jul 31, 2013 9:04am

Returning to J’s from from the waiting area, where I,d previously been posting updates things are currently running along. I’d left while a tech was imaging his liver and blood vessels via Ultrasound, and returned to discover the Echocardiogram taking place. neither the Nurse nor the tech will tell me if this Echo also includes the “Bubble. study”…The tech was asking about if he’d had his VSD (Ventricular Septal Defect) repaired, and when, sounding like she’d thought the repair was more recent. Hmmm…Please Pray that all that is going on here with his heart, circulation, BP, and of course his liver will be revealed and addressed and that God would continue to sustain us, whatever might be getting ready to come…

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Kenneth Update

Posted Jul 31, 2013 9:11am

Malika? And I spoke for quite some time about various aspects of caring for family with medical challenges and hospitalizations. he still needs prayer and guidance as they continue to try to diagnose and treat his conditions. she’s concerned that he may be needing a lung transplant…while talking her sister came to say that Kenneth was now willing to let his daughter visit…a definite answer to prayer!


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VSD stuff

Posted Jul 31, 2013 9:16am

apparently sitting bedside with this I-Pad is dangerous as I can at times give a play by play. The Echo Tech ia “confirming with my attending” to ensure that proceeding with the “Saline” is still OK. she indicated that there are sometimes issues with VSDs and this type of study within the EChocardiogram…


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ICUS Rounds Near

Posted Jul 31, 2013 9:32am

The the ICUS Team is nearing so perhaps I can raise the Anti-Anxiety med issue with the team to see if this could/should be addressed this way.

currently J’s nurse is assisting the tech to complete the bubble study, since she had cleared this aspect of the study with two docttors…apparently the ICUS Rounding Team should be able to answer my general questions about what a bubble study entails…but actual results pending interpretation by a Cardiologist….


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Posted Aug 1, 2013 1:54am

it’s been a long but good day. Josiah is doing great!!! It is likely that he will go over to the Mott floor sometime tomorrow…

Many things have been happening today. I haven’t yet heard the Echocardiogram results, so remain curious here.

Josiah’s had some good things happen: sitting in the chair for hours, plxaying bowling on the Wii both seated and standing, walking a circuit around the ICU, finally getting the NGO tube removed, getting to drink clear liquids, and ultimately eating Three Popsicles!!! the last a literal answer to prayer.

Visitors included parents, Grandma, twin brother Brandon (accompanied by his girlfriend Amanda), little sister Clarissa, and Pastors Andy and Janice.

Valerie escaped the hospital for a few hours but only managed one hour of sleep off-site (I’m running on like 10 cumulative hours of sleep since Saturday) but I did finally get to take a shower!!!

Elaine was a huge help today and plans to come back tomorrow to stay with Josiah so that I can finally get some solid sleep before coming back later tomorrow to pull the night shift and early day shift too. I need to be here for morning rounds to interface with the primary staff about Josiah’s care. Mom’s involvement today and great direct care of Josiah is allowing me the freedom to get some real sleep at some point tomorrow.

Tonight I wanted to Michael, Brandon, and Clarissa…see them…even more than solid sleep this early evening. I will attempt to get some degree of sleep bedside tonight so as to be better rested and able to focus during med discussions tomorrow.

In just talking to the nurse it sounds like there might be some significant info on his heart because even though the echo results have finally come in, the nurse said the doctors want cardiology involved in sharing this info with me…please pray for the timing and substance of this cardiac revelation, and for wisdom as to how to proceed and how to share the info with others (in the event the news will be somewhat difficult to deal with)…giving this too to Jesus.

They’ve been adding in some meds today, including some of those he was on prior to this surgery. I haven’t heard all the details and perhaps this info can wait until tomorrow.

Thanks for continuing to support Josiah and our family…we greatly appreciate you sharing this experience with us and carrying us prayerfully to the throne room!

God’s blessings and peace be yours…in Christ, Valerie


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Urgent Kenneth Prayer Request

Posted Aug 1, 2013 8:05am

I just spoke with Kenneth’s Sister-in-Law, who also works as a nurse. Kenneth coded during the night. Although Kenneth vital signs are somewhat stable now, He is still in a very Critical Situation. Please pray for Kenneth to be fully stabilized and for providers to identify and appropriately treat All of his current and ongoing needs.

Please pray for his wife, daughter, and sister-in-law, for God to provide for All of their individual needs: strength, peace, comfort, focus, wisdom, grit, and encouragement. May they each experience from The Lord what they each uniquely need at this time. Thank You so much for covering Kenneth and his family in Prayer.

God bless each of you in your prayer warrior excursions!

Your Fellow Weary Warrior, Valerie


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For Such A Time As This

Posted Aug 1, 2013 11:38am

I have been being prepared in various aspects of the crucible of my life for such a time as this.

My erratic sleep patterns having begun about April of 2006 (during the prep-phase and eventual resolution of a highly complicated Special Education dispute, that ultimately involved lawyers and a pending Due Process Hearing, addressed via mediation and mostly successful, from my standpoint, meetings). Because of the stress and upheaval and intense research and advocacy preparation I trained my body and mind to push beyond comfortable tolerances just because I was always working toward Total Resolution Of Virtually Every Issue that Josiah faced–basically an unrealistic, but lofty goal.

the bottom line is that I have been dealing with a highly disrupted and long-term dysfunctional sleep schedule but this biorhythm upheaval enabled me to continue to address Josiah’s myriad complex issues, as I can muster mental, physical, and emotional strength. All that schedule upheaval has meant that I’m pretty much as acclimated as possible to the crazy hours and lack of sleep I’m currently “enjoying”.

In this past year alone I’ve pulled more “all-night ears” than in the entirety of my pushing 50 years of existence. For the record, in case we’re keeping score, I’m at about 12 hours of sleep since late Saturday afternoon.

God can use All Things for our good and His Glory!


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Pray for T. J. and John

Posted Aug 1, 2013 8:12pm

When returning to my hotel room this evening I ran into Lori at the elevator. She’s in town today from Ludington to be with her dad, John, who is to undergo surgical removal of a cancerous kidney tomorrow at the VA hospital in Ann Arbor. His other kidney still works well. Pray for them both as God leads.

Lori was sharing about praying for a 10 year old boy at U of M who just underwent a heart transplant. T. J. has been doing poorly post-transplant and they were placing a pacemaker to help him possibly go home eventually. He has been at U of M long term pending this heart transplant. This heart must be less than ideal for it may only hold him over for two years. Please pray as the Lord leads you for young T. J.

Lori is an obvious tender-hearted Christian woman. We had an encouraging conversation for quite a while. Thank you Lord for the Fellowship of the Believers and how we can Lift Each Other Up!

I am now going to attempt a series of smaller postings about Josiah as I’m using a laptop with WiFi at the hotel and this is really touchy…


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In a Blur

Posted Aug 1, 2013 8:22pm

It’s getting harder to keep track of days and times as all the details are beginning to swirl together in somewhat of a blur…

Overall Josiah is doing very well. When I left the hospital about 5pm to head to the hotel for “solid sleep” (Ha). They had just finished doing all the things needed for him to be ready to move to a general floor once a bed opened up: removing the urinary catheter, all but the last 2 IV lines (one in each arm), disconnecting him from the leads monitoring his vitals.

There are critical cases that need the ICU bed. There are also like 17 pediatric patients being cared for in the ER awaiting beds in Mott. Although it’s preferable, from our family’s standpoint, for Josiah to be in Mott, it may be more critical that another patient would get his place there.

Please pray for God’s will to be done here, and for all those needing the ICU, and those patients being managed in the ER to get the beds and care they need. Pray that doctors and staff make good decisions for those nearing the end of their hospitalizations so that their care isn’t shortchanged in the rush to re-fill those beds…The hospital is filled with so many people in desperate situations, may the Lord intervene…


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The Auto Zone

Posted Aug 1, 2013 8:37pm

Yesterday when driving to the hotel to check in and “sleep” and shower, I took a curb turning right at the stop sign. There was a very loud double clunk that makes me keep observing the rear passenger tire to ensure it’s not leaking (and the van already needed an allignment…).

Last night when I returned to the hospital the “idiot bells” went off twice. The check engine light is always on (for no known reason) so I think that made me think the engine might have had an issue. After getting a wheelchair to move gear the van had sat 5-10 minutes and had strange sounds from under the hood, but in my sleep deprived state I am unable to accurately recall and describe them.

Michael checked it as best he could last night and my dad today before I returned to the hotel. Hopefully everything’s OK here.

Please pray that God will sustain my vehicle in sufficient working order so that I can make these necessary hotel/hospital runs then get Josiah home at discharge without issue. If there is a break-down, please pray that there will be appropriate and immediate help, as I don’t carry a cell phone so cannot directly call for aide. Also please pray for the timing of addressing these potential problems and the needed funds to cover any needed repairs.

Once Josiah comes home he’ll have weekly Transplant Clinic visits for the first 2 months and possibly even more frequent lab requirements, so we’ll need secure transport. Michael hasn’t yet been able to repair the brakes and brakeline in our older van, the 1990 conversion, and as that’s our breakdown back-up vehicle, things could get challenging.

I could theoretically pursue some ride provision through Josiah’s Medicaid-like insurance that currently re-imburses gas mileage, but this is a much less desirable choice as you have to call 2 days in advance and I have No Idea Who They Would Provide as a driver, nor even the caliber of their own transport vehicle. Perhaps it’s pride keeping me from wanting to consider that avenue…


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Food Glorious Food

Posted Aug 1, 2013 8:53pm

Josiah was So Relieved when they finally removed his NG tube and he was able to take things orally again. I hope I said before that his prayer for Popsicles was answered in that, I believe, he was able to eat three popsicles before Midnight yesterday.

When placed upon the clear liquid diet he really began chugging down the fluids. He also had voluminous urine output. (Which reminds me of a secondary, personal issue…Josiah struggles with Nocturnal Eneuresis, bedwetting. This is still such a significant issue that sometimes he “pees his bed out” numerous times a week, even though he routinely wears 3 pull-ups and 3 liners at night. I’m concerned that under whatever degree of sedation he has that he’ll be even less likely to waken to pee than typical. Josiah did Not want them to remove his urinary catheter, at least in part due to fears of wetting the bed. Also, no where in the hospital do they apparently have “pull-up” style bedwetting undergarments. They have huge adult diapers which Josiah is adamant about not wearing. His current options are to wear the diaper, wake up to pee in the urinal so they can measure his output which is desired, continue naked under his hospital gown and if he “pees his bed out” they’ll just clean it/him up, or to start wearing a Condom Catheter–is putting a condom on an autistic spectrum 17 year old really where medicine will take us here?)

Later on once his regular diet was ordered I spent quite some time going over the entire available menu for items he liked/wanted then placed the order to Food Services. Once his tray came, Mom, Dad, and I–though mostly the grandparents–tag-teamed encouraging him to slowly begin eating a variety of foods. This was reminiscent of the post-op phase of his second heart surgery where Dad used the notorious “Stoddard Hard Head” to prod Josiah into eating with great results–both then and now!

It was hard for me to leave it up to Mom and Dad to manage Josiah’s food ordering etc for the evening meal because he and I have worked out how we communicate with each other and it’s hard to relinquish even this small area of his care to others, even though they are more than capable…


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Caffeine Lean

Posted Aug 1, 2013 9:18pm

One of the messages posted by a Birth Cousin of mine (my mom was adopted and I tracked down here Birth Family more than a decade ago…there’s a long story there for anyone who wants to have personal genealogy discussions out there–calling all family history buffs, genealogists, and personal history nuts!) accused me of Over-Doing the Caffeine…

Well, in my defense I’ve had Virtually No Caffeine since Josiah’s been hospitalized this time (I don’t do the stuff much anyway). Frankly I don’t like where this leads bathroom wise and there is No Way I want anymore of that “Sandpaper Torture Chamber” (otherwise known as a hospital bathroom with attendant horrific TP) than absolutely necessary.

Actually this TP issue was something I recalled from his last inpatient stay for the brain tumor removal. I pretty much vowed then to bring some of our own TP and spare the brutal (butt-al for you Curtis!) assault this time, but changed my mind. I just can’t seriously countenance sauntering to the can with primo (as in the cheapest TP Sam’s sells by the case) to pamper my not-exactly-petite-boutee (pronounced Boo Tay, for Curtis again)…I may have now crossed into the realm of the virtually slap happy and am in danger of overtly revealing my mega feet of clay!

Anyway, I’ve had a few sips of coke, no coffee, nor tea, and two separate doses of headache/migraine OTC meds and that’s the extent of the caffeine intake for me thus far. Whatever energy I’m having here is not drug induced, unless you mean my own endocrine system.

The other night my mom accused me of being in a practically manic state based on how much I was verbalizing in relation to managing and processing the Jazzman. At that point I’m like “are you serious???” is sitting in a chair, with my head resting back, my eyes shutting in exhaustion, and my voice sometimes slurring, perhaps in sleep deprivation Yet I was still able to verbally communicate fairly coherantly–though Obviously Not Concisely (as if anyone who dares to read this thinks I’m even Capable of Being Concise!)…

For scorekeepers out there I have Years of this info crammed into my head and very few places where it is allowed any type of exit. In the former email updates (that are available within this blog under headings of “Historical Email/Update #?) I would articulate many of these issues as a way to attempt to process what was being faced surrounding caring for Josiah, as a way for me to document things somewhat consecutively so as to be able to review things later and sometimes formulate plans of action, as a format for requesting prayer for specific and complex needs, and even as a way of reaching out toward others via openness and transparency…this remains true for postings on this blog.

The prior emails were sent into the ether because I had things that I felt needed to be said and few if any places in which to say them. In a very non-spiritual way somewhat like the prophet and the “fire shut up in my bones”…did I hear the readership say “shut up? Amen!…get back to the Jazzman…” When there are few outlets and mega-tons of stuff it has to go somewhere…and my “stuff” especially pertaining to Josiah and all that entails is so big that it’s hard to boil it down to the bullet point format for those who need stuff presented that way…enough of that now!


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24/7 Care

Posted Aug 1, 2013 9:54pm

Ideally I want someone with Josiah at all times, or at least within the facility and accessible, and I want that person to be me. On shorter hospitalizations I can Gut it Out bedside. These longer stays become challenging because you can only exist on Guts and Glory so long before things cave in….I’m anticipating Massive Cave In for me once I get home…

In the meantime if I can’t always be there I really would desire someone else to provide coverage, but no one can do what I do (as any parent/mom of a special needs child probably feels). Yesterday Mom and I came to a place where I could confidently leave Josiah to her care and it seemed she was pushed beyond her tolerances, but perhaps near their limit. She left around 1am and returned today sometime after noon, with Dad along today.

It’s not their job to stay bedside, it’s mine. I do appreciate the freedom to leave having someone else there affords me. However I am used to doing the “surgery thing” mostly alone (both by choice and necessity–as in Michael doesn’t need to use precious Vacation/Sick time to hold my hand during this stuff all the time and he really has to invest in managing the home front while we’re gone. I’ve heard before that most people come to surgeries with at least one other support person. Of the now 21 surgeries split between our boys I’ve been alone at all but 4, but those 4 were the biggies (2 open-heart, brain tumor, and now liver transplant).

Since I am usually alone, I also am used to handling things “my way” while always keeping Michael and extended family (as needed) abreast of key developments. Perhaps this makes allowing for the sharing of the load to occur more challenging for me. My mom is quite skilled from the nursing background to manage many aspects of Josiah’s care with great care…it’s just no one can do/think as I do. Whenever I’m not there when key things are addressed it is challenging for me. Perhaps lowering my standards and expectations of myself and others would ease this discomfort, but I doubt it. Obviously no one but God ever Fully and Truly knows what’s going on in Any arena, so I guess at some point it comes down to “doing the best we can with what we have to work with” and relying on God’s grace to fill the gaps and sustain us.

So before I left Josiah this evening, and he was still in my parent’s company, I needed him to clearly understand that there would likely be a gap in family coverage as I slept and M & D left no later than 9:45pm due to their parameters. They also have appointments tomorrow and need to husband their energy.

Also Michael needs some space and time to regroup and I strongly encouraged him to stay home this evening, if he could. This ultimately means that there may be some hours where Josiah will be alone. It also is possible that the transfer to one of the general floors will occur with no family there tonight to help him deal with it. He struggles with anxiety and those of us who know and love him best have learned pretty well how to help him through difficult times. It’s possible that he’ll be mightily challenged and he’ll only have God and staff who don’t know him well, don’t usually work with pediatric let alone autistic complex issue kids. I guess I need to be willing to allow him to experience this crucible himself, and see how he does and how God sustains him.

Please pray for Josiah and this time alone, that God would provide for him all that he needs!

As I’m writing I realize that I’m using up precious (theoretical) sleep time, as well as meal time. However, I’m still feeling the need to articulate a number of issues both for your prayer covering and for my own ability to process what’s happening.

A key point I just realized, which will likely anger some closest to me is that with tomorrow being Friday it might be most crucial for me to be bedside for all the rounds, as the Junior Varsity is more likely to be providing staffing over the weekend and certain issues may not get adequately addressed now until Monday.

As such, I believe I’m now going to end up setting an alarm for between 4 and 4:30am so that I can be bedside hopefully no later than 6. This way I can fully participate in his care and have a more complete understanding of what issues are being faced currently….however, I reserve the right to rethink this plan when the alarm goes off and to give myself “permission” to fail in this area and follow my original plan to just sleep until I wake, then return.

It’s possible that during the weekend when the care-giving is more routine from the staffing standpoint that then I might get some repreive by others and catch some of that elusive, deeper, longer sleep I’m missing…


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Posted Aug 1, 2013 10:09pm

Yesterday when Josiah was being helped by Physical Therapy, Mom was over there managing the family component while I was talking and later praying with Andy and Janice. We started praying while Josiah was standing with PT staff on either side of him for support and balance playing a game on the Wii.

While Janice was praying in thankfulness for Josiah standing she must have glanced up and noticed his empty chair and his absence from the room. Then she sputtered into thanking God for Josiah walking. This won’t come out as funny as it seemed at the time, at least to me, as I interjected something about the Rapture having come and Josiah being the only one amongst us who’d made the cut…elaborating that I was pretty sure I might fail the test but surely thought the Pastor and His Wife would have passed the filter! Not sure if Pastoral senses of humor extend this direction!

Anyway, they got him up and walking around the room and while he was trotting by the door he called out basically a “look at me Mom” with a wave thing and I about fell on the floor.

Later that evening his nurse talked about how amazing it was to see Josiah walking that fast and that far, an apparently less than 24 hours after surgery! Today the PT elaborated that he had indicated yesterday that his stomach actually felt better after he had walked!

Which reminds me that so far there has been No Nausea (that I’m aware of) which is a Huge Praise the Lord, as the anti-rejection meds can have really rough side-effects and the medication management paperwork even needs to spell out time frames for re-dosing after vomitting as standard info–joy.

Well, since I’d missed really seeing him walk yesterday I was determined to observe today. However, just when PT was beginning to walk him, that was when the Liver Transplant Docs decided to come visit with me based on the nurse’s 5 hours’ previous page…This discussion distracted me so much that I only cursorily saw him walking again today–sigh.

However the PT (Physical Therapist) shared that yesterday while he was walking that he said it made him feel like Superman!

Well, Superman seems like a good place to leave this Transplant Tale…

If you’ve actually read some, or even all of this, please drop me a line for I’d love to know if this sharing part of our experience with our son’s liver transplant has impacted you at any level.


I hope that we have been glorifying the Lord even while sometimes exposing our own feet of clay.

Whatever circumstances you may be facing, be encouraged in that if my autistic son can overcome & even thrive while walking through the Valley of the Shadow of Death you too can experience God’s comforting & sustaining presence in the challenges impacting you and your loved ones!

In Christ’s Love, Peace, Joy, & Thankfulness!




Anatomy of a Medicaid Physical

Today I had to take my son, Josiah, to a doctor’s appointment to have a Medicaid mandated yearly physical.  Here are some of the myriad aspects of addressing my son’s needs…

Triggering the negative memory of why this physical was originally rescheduled to accommodate the schedule of a Special Education Attorney that were needing to see about our recently filed “Due Process Hearing Request”–that “case” having now been “dismissed” in a manner as to provide no resolution of significant issues and seemingly no recourse for any type of a redress of grievances…

Looking again for paperwork associated with accessing Special Olympics and a local ARC Chapter as a way to potentially support my son’s desire for athletic participation.

Speaking with someone at the doctor’s office prior to the appointment to see if we could get the necessary forms printed off there as our printer is basically inaccessible…fortunately this was something the nurse could do once we were there.

Gathering necessary materials from several locations in case any of those particular items needed to be referred to during our visit.

Since Josiah didn’t bring something to keep him occupied during our waiting room time offering him the “Autism Speaks Family Services Transition Tool Kit” (this was a resource that I had laid aside some months back when in the immediate intensity of preparing our “Due Process Hearing Request” & it represents another load of guilt I carry for not having satisfactorily nor sufficiently made transition efforts)…as he flipped randomly through this item he became increasingly verbally and physically distressed, especially when he encountered “sexuality” in it’s pages and would only spell the word s-e-x and expressed his upsetedness that this was even a topic within the book.  I kept trying to reassure him that it was a part of life so it was reasonable to have to discuss this area at some time.

Discussing various aspects of Josiah’s recent medical needs and medications.  Since we were seeing a provider that wasn’t usually on Josiah’s case she was not personally very familiar with our unique situation.  This meant expounding on issues that are theoretically in “the past”, but still retain power to impact, distract, and detract from present tense realities.  This meant a more thorough discussion of his Brain Tumor scenario as well as touching on the Liver Transplant and part of what lead up to it…Also there was a side jaunt into the Cardiac need for “Aspirin Therapy” but that we were pending this until getting concurrence from Liver Transplant.  Having made email requests and having the Cardiologist send an in-house request for this Ok in addition to requesting the Transplant Pharmacy (from whom we receive the bulk of J’s meds delivered on a monthly basis) to use it’s medication management techniques has gotten no apparent results.  This either will await the 6 month Transplant visit in May or next month’s post bloodwork nurse’s call to see if we can get that med started to prevent blood clots in his heart–sigh…

We also briefly touched on the CPAP issue, how he has yet to get back into compliance with his sleep apnea breathing machine.  He first got out of compliance when the machine broke and after the “repair” a part went missing (not sure if at home or at the repair shop) and it was then un-usable for a period of time.  We got the replacement part donated and another newer machine but he was only beginning to reorient himself to its usage when he had the Brain Tumor removed through his nose and he wasn’t even Allowed to use the CPAP for six plus months.  Given he was then on the Transplant list and I was pretty much a basket case I surely dropped the ball in this arena (how much you have to prompt someone to do certain things when they are on the Spectrum and have gotten out of a particular functional routine)…Anyway he has since moved his bed from the platform to the floor below and disassembled his CPAP machine for a recent Sleep Doctor visit and Med Equip run (for new mask, hose, & filter supplies)…so he has not gotten back into the routine and when I remember to remind him about using CPAP it’s when he’s preparing for bed and too tired to deal with it…of course I forget to prompt about this when we’re both awake–sigh…

His most recent surgery having been the one to “correct” congenital double vision (V -pattern esotropia?) meant going into details of how that condition was discovered back when getting the Neurological Ophthalmologist’s input on the safety of surgically removing the Pituitary Tumor as it was basically pressed up against Josiah’s Optic Nerve.  Apparently that doctor diagnosed the congenital double vision back then in 2010 but since I was overwhelmed with the presence of both the Brain Tumor and the Liver Masses (and the intensity of which situation was More Life Threatening and pre-eminent) I didn’t actually “hear” that diagnosis (it’s also possible that layman’s terms weren’t used so I didn’t actually “comprehend” the significance of “V pattern esotropia” and the result was that Josiah suffered with Double Vision for an additional Five Years before surgical correction this past summer.

This also meant discussing the extent of the “correction” which our two post-op visits had indicated was 100% successful but a recent OT eval for “Vision Therapy” seemed to indicate that double vision persisted, at least at longer distances…and also that Josiah apparently has 20/40 &20/50 vision in his eyes.  [I’m guessing this means we should be looking into some type of correction but who/where I don’t know.]

This also meant discussing “Vision Therapy” and how the only reason I even got a referral from the Neurological Ophthalmologist for a therapy he considers “controversial” is because I asked if we could at least see if it could be effective for Josiah in particular.  The University-based OT we were referred to does Not do such therapy, but did some type of evaluation to see if Josiah might be a candidate…it appears that he might be.  Today’s doctor said that Josiah’s Primary Care Physician there “is a great believer in Vision Therapy” but apparently most insurances don’t cover it and it can cost upwards of $3,000, which would basically mean no access to this, unfortunately.  She said one clinic family had managed to get Medicaid to cover this treatment and she would look into what they did and pass the info along.  I speculated that due to the surgical “correction” of his congenital (birth defect) double vision perhaps coding for visual therapy could be used for another diagnosis apart from Autism so that he could receive this seemingly important and necessary intervention…we’ll see…

When she asked about how things were currently going this lead to an intense and convoluted and rather disjointed retelling of some aspects of our recent special education battles.  Josiah & I both shared multiple perspectives and just discussing this situation at any length (as well as not discussing it and keeping it bottled up) is incredibly exhausting.

Apparently the way this, and other topics, were addressed led this doctor to conclude “I had no idea you were this alone” and she kept trying to reassure me when I expressed a number of arenas of self-criticism for not doing a better job in seeing Josiah’s needs met; particularly those issues related to Transition and Special Education.  She was quite empathetic regarding the magnitude of the issues we have faced and sought to reassure me that being only one person meant that I could only do so much.  Speaking obliquely of my responsibilities to the other four family members reminded me of how short I have fallen as a wife and mother over so many years when I’ve placed such emphasis on attempting to address Josiah’s needs.  Certain conversations at home later helped to increase this load in part and alleviate it in part, especially when the emphasis was on trusting the Lord to be the one to carry and  be responsible for addressing Josiah’s needs…

Observing the physical examination lead to overhearing the aside diagnosis of “mild scoliosis”, something I’d never heard before in relation to Josiah.  The Doctor indicated a stiffness in his shoulders and a tilting and I mentioned his history of Torticolis and wondered if what she was observing was related to that.

Josiah blurted out his frustrations, on my behalf, about historical verbiage by a Michigan Protection and Advocacy “advocate” who had “helped” us about a decade ago when we had also filed our only other “due process hearing request” against our local public school (the only significant gain from which was a Para Pro provided roughly SEVEN YEARS after the doctor–legally mandated IEP Team Member–had recommended, in writing, that such a one on one support be provided to Josiah so he could remain in general ed; I obviously have No Unresolved Issues here!)…anyway this led to me quoting the above “advocate” in her phone response to my then attempt to lay out the magnitude of the issues we faced getting our son’s needs met via the school.  “I think you are a delusional mother who refuses to accept that you have a mentally retarded child!”  Josiah is still angry about this and the Doctor was seemingly shocked that we received such treatment from an organization who exists to protect and defend the rights of the disabled…whatever (they didn’t really help us this “case” round either, but that’s another story)…

The doctor mentioned another family facing similar challenges where the father has become a tireless advocate on his son’s behalf.  She said “he’s like you only times a thousand”.  He has been aggressively advocating on his son’s behalf, even to the point of picketing in front of schools in an attempt to get needs met.  She may put us in touch with each other since our sons are similar ages and facing similar Transition needs.

She mentioned that this father “only” dealt with Autism with his son, not the complex health related Scenarios we face with Josiah.  This led to me expounding on how Autism has really become for our family the overarching issue impacting us daily in relation to Josiah.  Apart from times of extreme medical stress, like waiting for a transplant, or the ubiquitous pain, frustration, anger, and disappointment of dealing with Special Education and Not getting his legitimate needs met the Autism side of life was our main “stressor” and should not, in my opinion, be spoken of in any minimizing way…

In a side highlight, we briefly touched on the issues of vaccines based on questions on the Special Olympics form.  Josiah is currently out of compliance with some vaccines and this was in part due to Liver Transplant recommendations.  We had Josiah receive All the vaccines recommended by the LT Nurse prior to Transplant (and his siblings get the ones LT recommended they receive to put their brother at less risk post-Transplant).  This was after years of me declining most/all vaccines for all our kids because of Josiah’s Autism (and in part because of a book that speculated that ADHD and Autism were in fact on a continuum)…anyway I ended up expounding on the frustrations of being pressured by the other kids’ doctors to vaccinate them even when I referenced a study I’d heard of (but not read) that purported to show the difference in autism between Amish and general populations.  This doctor said that she and J’s PCP are strong believers in an association with Autism and Vaccines.  I said I didn’t think that vaccines Caused Austism, per se, but more that people that are prone toward Autism are perhaps more neurologically fragile and that giving so many toxins so young and so soon to children likely increased their likelihood of neurological disorders like Autism.  The doctor didn’t dispute this layperson analysis, but went on to add that she thought overuse of antibiotics may also be a contributing factor…hmm…

As an aside, I mentioned that Josiah had NEVER Received ANY of the intensive Early Childhood Autism interventions.  This I believe was in part due to the magnitude of the medical issues being addressed then but in greater part due to the Special Education system NOT addressing his needs.  I believe I may have also mentioned my exploration of the topic of “disability discrimination” that I believe has directly plagued us in our local school district since at least 2001…but I may be mixing that us with a later discussion at home.  I told the doctor that I had recently downloaded a scientifically based research analysis study that purports to assess a number of autism approaches and their effectiveness with teens and young adults.  As this study is nearly 200 pages long I have not yet reviewed it.  Here is another arena where I would greatly appreciate the input from the Primary Care Doctor, and she sounded like she’d run some of these issues by her.  It would be great to get some real-world insight on this topic from one of only 3 Michigan clinics authorized to do the Autism Waiver work mandated under certain insurances now.  Hopefully this conversation will Actually take place and the results get back to me…

This was also mentioned in that since it appears that our “legal case” is stalled out and little, if any, help will be coming (at least not any time soon)…it now is becoming that much more imperative for me to find some way to cobble together Real and Meaningful Transition Services and Supports to Finally Attempt to meet my son’s myriad needs.  Since “special education” is seemingly out of the picture at least this process need Not be limited by what is mandated/allowed by IDEA (Individuals with Disabilities Education Act).  I’m trying to look at that “freedom” as a degree of blessing even as I “officially” take over the role of Josiah’s “Transition Coordinator” (which I’ve basically been attempting to do anyways), a role legally mandated of special ed but NEVER Done!

She also planned to have one of their Social Workers, I’m not sure which one, look into further Transition Resources for us.  They are also to send us material regarding current offerings for Adaptive Sports.  I tried to get a business card and email address for this particular social worker upon checkout but was unsuccessful here…

I mentioned how the complexity of Josiah’s needs over the years has made it very difficult where to focus my efforts.  Her colleague, Josiah’s Primary Care Physician, has been an invaluable resource whose advice I make a consistent effort to put into practice.  With her “umbrella style” care in Josiah’s case (she gets virtually all specialty reports and processes and discusses them with us periodically) and her more “Big Picture” perspective, as opposed to my more “lost in the minutae” (no fake!) approach, can really assist in gaining a measure of clarity in numerous areas.  I so value how much this particular medical clinic has come close to providing a degree of “medical home” style service to us over the years!

Josiah also stated that I verbally took out my anger about the “case” on one of my older son’s friends.  This meant clarifying that I was speaking passionately answering questions he had asked.  As an aside, that young man is in college and is likely to pursue a Law Degree and eventually inherit his mother’s Law Practice.  He had taken a copy of our 12-4-15 “Due Process Hearing Request” copied and read it (and provided constructive feedback) and given copies to his attorney mother and one of his professors who teaches pre-law classes and is also an attorney.  We had given him permission to spread this info around thusly in hopes that some help would Eventually be forthcoming…

Josiah got pretty revved up expounding on our plans to write some letters to various people that we hope may have an impact on the special education situation and disability discrimination.  He and I are both planning to write to our local Michigan State Representative.  Josiah was in a class with this man’s son a number of years in elementary school and has learned to communicate with him even though he cannot speak–he has Fragile X Syndrome.  Both J and the son “graduated” this past Spring, though I believe that the son didn’t get a “diploma”, but likely a “Certificate of Completion”.  Writing to this man could be a crap-shoot, at least from my perspective.  Josiah is apparently much further along than his own son (who likely continues to receive some type of special education supports and hopefully some degree of transition services).  He may perceive our efforts to finally secure meaningful, appropriate, and legally compliant long-overdue education services in a negative manner given what he’s experienced with his son.  However, he could end up being a tireless advocate and a voice to represent Exactly What We Need because he, to at least some degree, has learned that hard fought language I also reluctantly but necessarily have been forced to speak.  Other people I am contemplating writing are the Secretary of Education, federal and state; the Governor; the local School Board; our County Level Educational Authority; certain disability organizations; and whomever else a letter writing Advocate in our State (whom I hope to consult/collaborate with) may suggest…

I completely forgot to ask her what she saw in his ears since he’s had a history of persistent fluid buildup and Otitis Media…also didn’t ask if the eardrum was retracted on either ear.  He has had a problem with negative pressure in one/both ears since no longer having Myringotomy Tubes surgically implanted and this can mean in the long run Permanent Hearing Loss as persistent negative pressure can lead to his inner ear bones rubbing together and wearing out to some degree.  This issue may be a lingering effect of his presumed Eustachian Tube Dysfunction…

Me being without many supports to process/discuss so much of what’s gone on, or is currently going on with Josiah, led to me recounting briefly how finding a support group has been difficult.  I used to “lurk” in “Moms Online” and read, in particular, various forums focused on their kid’s diagnostic categories.  I told this doctor that I’d go to various message boards like “Congenital Heart Defects”, “ADHD”, “Autism”, “Urogenital Defects”, “Prematurity”, etc and that I don’t think I ever found another poster dealing with even three of the things that were heavily impacting us at that time…it’s so hard to find Anyone who knows this language in which I’ve been unwillingly forced to become so fluent (medical-major & minor; behavioral; therapeutic; “educational”; legal; interpersonal; advocacy; psychosocial; complex family dynamics & diagnoses, etc.)…this can make addressing the magnitude of issues and factors associated with the care of a complex child so much more daunting and isolating….

Filling out the family portion of the Special Olympics physical form requires a brief jaunt down painful memory lane (though not quite as brutal as a pre-operative questionnaire; it’s difficult to have to give significant details on virtually every body/mind system).  For the “Major Surgeries” I was able to pull from his 17 surgeries “2 Open Heart, Brain Tumor, Liver Transplant, Eye, and Ears, etc.”  (Oops I forgot to list hernia repairs, 3 stages of urogenital repair, & tonsillectomy, but afterall do I even know what constitutes “major surgery” anymore?)

The Doctor asked about our Respite Care services and the hours we were supposed to receive.  This lead to discussing how he’s has Community Living Services listed in his Community Mental Health case for years but is not getting them fully.  We’ve asked for another staff person in addition to the young man who works with Josiah on both Respite and CLS.  This lead to discussing how “Supports Coordination” via CMH has broken down at key points, like when we were trying to establish “Power of Attorney” or how Josiah has now been without needed PT, OT, and Speech Therapy for a year.  The Doctor mentioned their in-house social worker who handles “transition issues” and I said how I’d used her recommendations with CMH in that they can verify with our primary insurance whether they will or will not cover the above therapies…if not then they can immediately begin billing Medicaid…this has been going on for about 6 months with me reminding CMH staff verbally and in writing…so far to no avail…

Answering “Please indicate intellectual disability, diagnosis if known (condition or cause)” meant discussing more of the nitty gritty of what exactly Josiah’s challenges may be in this arena.  I’ve been told that his “developmental disability” diagnosis is “PDD-NOS” or “Atypical Autism” and wondered if this would apply.  She said they were referring to “cognitive or intellectual impairments” and Josiah didn’t have one (though his paperwork has said otherwise, depending on the source)…we are really dealing with various aspects of “neurological impairments” and so it’s unclear, at times, how to “classify” Josiah’s complexity in this domain.  The “answer” I wrote said “PDD-NOS, Learning Disability in Math, “mild cognitive impairment””, the last quoting some other documents.

This led to me having to explain to Josiah that he may be too “high functioning” to participate in Special Olympics at all.  In the event he is allowed to participate I was trying to prepare him to handle a scenario similar to one he experienced years ago where he was in a “social skills” group at CMH with “high functioning autistic young men” and he was angry and hurt that he was perceived to be like that group since he was the highest functioning one, seemingly.  He keeps hoping to have interactions with people who are “like him”, whatever that means.  If he’s in Special Olympics and more higher functioning than most then, I’m encouraging him to be a leader, friend, and helper to the others.  He will need to learn to communicate with each person, learn their names, and learn how to become part of the team, especially if many of the people have been working together for a long time.  We both took time to read and sign the appropriate paperwork…

Josiah tends to “perseverate”(get stuck or fixated–what’s wrong with that???) on certain topics, and one of late is his desire to play sports with regular guys.  This can mean re-treading ground like how he wished he’d been cleared by Liver Transplant to sustain body blows in time to have joined his high school football team.  He has been “friends” with many of the footballers but was unable to participate for medical reasons.  He also Really Wants to play basketball with guys, like his brother.  His oldest brother has been lately going once or twice a week to play B-Ball with various guys.  One location includes guys like my brother, in his mid 40s, so might be a slightly better “fit”.  I’ve been trying to convince Nathaniel to at least take Josiah once and Potentially give him some court time.  N is pretty adamant that J couldn’t handle the intensity and that he could really get hurt….Josiah is really caught in that “high functioning” place, too high functioning for easy/reasonable access to supports geared toward more severely disabled people and too low functioning to reasonably fit in with regular “able bodied” guys…

Believe it or not, this post actually started, at least in my mind, as more of a bullet pointed short-hand listing of certain (tedious and mentally/emotionally exhausting) details of just what went into having a “routine physical” with my son–accompanied by yours truly.  Obviously that “goal” has transmogrified into the monster displayed before you.  Since one of my primary reasons for starting the Special Connections blog was as an outlet to process many of the issues with which I wrestle, it appears that this posting is actually living up to that personal expectation, to some degree.  Given the level of “perfectionism” which my personality, past, and/or current life requirements demand of my existence that is a nearly impossible task!

This posting has been written over the course of several hours with numerous familial interruptions breaking my train of thought.  Since it’s now exceedingly late it looks like I’m going to post it in an “as is” status.  Hopefully you will all bear with my feet of clay as you read through the barrage of info here…if you even choose to do so.

I hope and pray that somehow our journey can be an inspiration and encouragement for you to continue to press on in arenas where you find yourself facing difficult, painful, traumatic, inevitable, hopeless, hopeful, tenacious, resilient, overwhelming, belittling, labeling, understanding, and supportive forces.  May the positive “forces” outweigh those that would seek to destroy us.  For our family the ultimate source of strength is in our Lord and Savior, Jesus Christ.  It is His Indwelling in each of us that provides us with the fortitude, tenacity, resiliency, and fidelity to Truth that somehow enables us to “rise and rise again”–I guess you could say that we are acting via Resurrection Power, Life from Lifelessness.  If you are encouraged or challenged by reading our words, we would love to hear from you, and to pray for your needs, if you would care to share them with us.

I’ll leave you with a listing of questions that still remain outstanding from our last visit with the Primary Care Physician from today’s clinic.  When she saw me pull out my steno notepad (“Blue Brainiology, the Jottings” a notepad I started keeping starting 11-30-09 when we had the first specialty visit following the discovery of the Brain Tumor and Liver Masses and that initial appointment included a Pediatric Neurological Oncologist, among other disciplines), one I have taken to virtually All Specialty Clinics but never her visits, with a listing of questions written out she became overwhelmed and said we’d have to discuss them over the phone.  Though she gave me her cell phone number I chose not to call her, having used up more than enough of her time during that day’s visit.  Subsequently some questions were answered by other clinic staff, nurses and/or social workers.  Below are questions that remain outstanding.  I Might include a couple questions for which I got an answer if I think that info could potentially benefit anyone who still might be reading this missive.

Thanks again for joining our journey.  God Bless–Valerie

Outstanding steno notebook questions I hope to send to the clinic staff and get addressed via email or other communication:

#12 For someone of the autistic spectrum, especially if they are “high functioning”, what is her general overall recommendation to education, medications, therapy, lifestyle, etc.  Like does she typically recommend an aide/para pro in the classroom, Least Restrictive Environment, a Center-Based program; LOVAAS or ABA (Applied Behavioral Analysis) Therapy?  [this was to inform the development of our case request and to provide a professional frame of reference of perhaps what “should have been done” for Josiah in analyzing the “appropriateness” of his education, at least as pertained to Autism]

#13 Should the issue of adequately addressing Learning Disabilities be limited based on the child’s “perceived” intellect?  [we have had many battles with special ed over what Josiah’s “true IQ” actually is…in an earlier iteration of IDEA schools were allowed to use a “severe discrepancy” model between “IQ” and individual subtest “performance” to determine whether or not an LD was actually present.  Given a more than 30 point IQ difference between what the school psychologist found–testing J in a manner that was entirely discriminatory based on the nature, severity, and complexity of his many even then known disabling conditions–versus what the University based Neuropsychologist found, using the the higher, and I believe more accurate, IQ would have allowed most arenas to be considered LDs; using the school’s number would have at a minimum allowed the Math arena to be considered an LD, but back then they claimed “low intellect” and therefore no Learning Disabilities so no interventions]  the Math deficit is a huge factor that drove the “due process hearing request”–for if Josiah indeed has a (near) normal intellectual capacity, as early U of M (and some subsequent) testing portrayed, then giving him a “diploma” without appropriately educating him in math is a huge FAPE violation…

#14 What Transition Assessments do you think provide the most meaningful info for planning post-secondary education, training, employment, independent living,  and community participation?  [all of those arenas are Legally MANDATED to be addressed in Transition Planning and Services under IDEA and the inadequacy of even assessing, let alone addressing, these areas was a significant portion of the then in development “due process hearing request” and, at that time separately envisioned “state complaint”]

#15 Do you know of a way for Josiah to connect with kids “like him” (high functioning, Godly, transition age, multiple challenges, etc.) and would that be in person or online?

#16 What resources do you know of and could recommend for Josiah (and I) to review–books, support groups, blogs, e-magazines, etc, to assist us in our current challenges and going forward?

#17 What’s your impression of STEP and do you think it might be a good fit for Josiah?  [STEP is a local program called Services to Enhance Potential; it is apparently for lower functioning individuals and provides a form of “skills training”–we had already interfaced with MRS, Michigan Rehab Services–basically the only form of “transition” his high school offers, as in passing the buck of their IDEA mandated responsibilities to Vocational Rehabilitation; we were told by MRS that they are basically for people a couple of months away from being employable and Josiah needed significant “skill building”, also the magnitude of his disabilities meant that regardless of when we returned to MRS for services he would likely be among the population whose needs were legally mandated to be addressed, irrespective of funding issues or his place in line–I believe this provides quite strong evidence that the HS did NOT do its IDEA mandated job in relation to transition, etc]

#18 What about Higher Education?  Locally or further afield where might be a good place to plug Josiah in to help him in heading toward ministry?

#20 Could she please put us in touch with anyone who has Successfully navigated a State Complaint and/or Due Process Hearing?

By the way, at that earlier visit with Josiah’s Primary Care Physician she reviewed an earlier iteration of what ultimately became our Due Process Hearing Request and agreed that  each issue we were raising was valid and important and didn’t suggest we change anything!  That was an important encouragement to receive during a time of pretty intense stress.

So if you have read this far, please hang in there no matter what you are facing…and hopefully, prayerfully, find a way to Hang on to Jesus!  Be Blessed, Valerie