Jazzman CarePage posting from this site: http://www.carepages.com/carepages/JournalingForTheJazzman/updates/3553951
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
Jazzman CarePage posting from this site: http://www.carepages.com/carepages/JournalingForTheJazzman/updates/3554008
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.
Jazzman CarePage posting from this site: http://www.carepages.com/carepages/JournalingForTheJazzman/updates/3554170
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!
Jazzman CarePage posting from this site: http://www.carepages.com/carepages/JournalingForTheJazzman/updates/3554194
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
Jazzman CarePage posting from this site: http://www.carepages.com/carepages/JournalingForTheJazzman/updates/3554212
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!
Jazzman CarePage posting from this site: http://www.carepages.com/carepages/JournalingForTheJazzman/updates/3554219
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
Jazzman CarePage posting from this site: http://www.carepages.com/carepages/JournalingForTheJazzman/updates/3554233
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!
Jazzman CarePage posting from this site: http://www.carepages.com/carepages/JournalingForTheJazzman/updates/3554237
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!
Jazzman CarePage posting from this site: http://www.carepages.com/carepages/JournalingForTheJazzman/updates/3554285
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!
Jazzman CarePage posting from this site: http://www.carepages.com/carepages/JournalingForTheJazzman/updates/3554291
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!!!
Jazzman CarePage posting from this site: http://www.carepages.com/carepages/JournalingForTheJazzman/updates/3554304
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,
Jazzman CarePage posting from this site: http://www.carepages.com/carepages/JournalingForTheJazzman/updates/3554314
[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…]
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!!!
Jazzman CarePage posting from this site: http://www.carepages.com/carepages/JournalingForTheJazzman/updates/3554325
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…
Jazzman CarePage posting from this site: http://www.carepages.com/carepages/JournalingForTheJazzman/updates/3554349
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…
Jazzman CarePage posting from this site: http://www.carepages.com/carepages/JournalingForTheJazzman/updates/3554351
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!
Jazzman CarePage posting from this site: http://www.carepages.com/carepages/JournalingForTheJazzman/updates/3554354
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…
Jazzman CarePage posting from this site: http://www.carepages.com/carepages/JournalingForTheJazzman/updates/3554357
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….
Jazzman CarePage posting from this site: http://www.carepages.com/carepages/JournalingForTheJazzman/updates/3554811
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
Jazzman CarePage posting from this site: http://www.carepages.com/carepages/JournalingForTheJazzman/updates/3554837
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
Jazzman CarePage posting from this site: http://www.carepages.com/carepages/JournalingForTheJazzman/updates/3554909
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!
Jazzman CarePage posting from this site: http://www.carepages.com/carepages/JournalingForTheJazzman/updates/3555134
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…
Jazzman CarePage posting from this site: http://www.carepages.com/carepages/JournalingForTheJazzman/updates/3555138
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…
Jazzman CarePage posting from this site: http://www.carepages.com/carepages/JournalingForTheJazzman/updates/3555157
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…
Jazzman CarePage posting from this site: http://www.carepages.com/carepages/JournalingForTheJazzman/updates/3555165
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…
Jazzman CarePage posting from this site: http://www.carepages.com/carepages/JournalingForTheJazzman/updates/3555182
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!
Jazzman CarePage posting from this site: http://www.carepages.com/carepages/JournalingForTheJazzman/updates/3555203
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…
Jazzman CarePage posting from this site: http://www.carepages.com/carepages/JournalingForTheJazzman/updates/3555210
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!