Duplicated on our CaringBridge site for permanent record here.
March 4, 2021, written by Mama
107 days in the hospital: 63 in PICU, 28 in the Oncology ward, 15 at In-Patient Rehab, and 1 back in the Oncology ward.
Today we tried to find out footing back at Heme-Onc. I am struggling with our renewed loss of privileges while on this floor (which is a more respectful way of expressing that I feel like we are in prison). Back in PICU, the patient could not ever leave the room (nor was Thomas physically able to, so it hardly mattered). Then when we moved to Heme-Onc, we were allowed to use Tom's wheelchair to walk a loop past the 10 rooms on this floor: exciting! We could go to the rooftop garden and we could schedule an appointment to play alone in the Play Room. That felt like freedom. But then we moved to Rehab, which is kind of like the Wild West in a lot of ways. We had the full run of the public areas of the hospital. We could go anywhere: the cafeteria, the restaurants, every single floor, the library, the chapel, the lobby, and the outdoor patio. Also, we interacted with other patients for the very first time on this journey. The halls were continually lined with patients (especially the teenagers) hanging out, listening to music, eating together, talking with nurses. There was a gymnasium and a play room and they were always full of therapists and kids, all existing together. There was even a family kitchen where patients and families were encouraged to dine together (I always laughed because COVID must have known not to be contagious in that room).
All that is gone now for an undefined future but that isn't just a short matter of days.
We sit inside these four walls. We see no other children. If we can get a slot in the play room (which I'm grateful for), it will be silent and alone. We are only allowed to whisk into the coffee room to grab a cup while wearing our omnipresent mask and whoosh back to our room, as the signs say NO DRINKING COFFEE IN THE COFFEE ROOM DUE TO COVID!
Thomas is free from his IV pole from about noon to 6:00 p.m. daily. He spent the morning in bed and enjoyed a visit from the art therapist. Then Physical Therapy came and Thomas did beautifully, including maneuvering his own position several times and kneeling up to watch out the window. This might seem so small, but we have spent three weeks actively trying to get him strong enough to kneel and today he seemed to achieve it without much struggle. Below, the therapist's hands on his hips were not holding him up but were massaging tension out of his muscles.
I requested a mat from Therapy that we can keep in our room for the purpose of allowing (making!) Thomas have mat time instead of bed time. He tried to convince me that sitting in his bed was just as much exercise as sitting on the mat, but I laughed at this notion and plunked him down for the afternoon. Thomas ended up sitting up on his own and scooching around for a few hours: watching TV, building Legos, digging toys out of his toy box. Now that I've seen how debilitated a person becomes lying in bed, I understand better just how many muscles are being activated by sitting up.
Today Thomas got his month-long wish to eat pizza. Typical pizza is actually egregiously high in carbohydrates and fat, two things Thomas has to watch out for or he will have bad GI symptoms. He's been asking me to find a pizza solution multiple times weekly. I couldn't find any frozen versions of whole wheat crust, and I just don't think Thomas will go for cauliflower crust. My grocery store stopped selling balls of whole wheat pizza dough. I found recipes for homemade whole wheat pizza dough, but I know my limits, especially at this time when I'm living in a hospital.
Finally I found Simple Mills Almond Flour Pizza Dough Mix on Amazon, so I whisked it to my home where our lovely 12-year-old daughter made a pizza for her brother. She used Rao's sauce (closest to sugar-free on the market you can find amidst pizza sauce which is typically high in sugar) and not too much cheese.
Thomas loved it and this Mama and Daddy are very appreciative.
Heading into his third night without any tube feedings, Thomas's symptoms are greatly reduced. He retched twice today, not hourly, not every 15 minutes. He felt so much more himself tonight that he was cracking jokes for my entertainment and laughing spontaneously--something I hadn't seen return yet.
Medical Updates
A hypothesis is forming that could explain Thomas's intolerance to tube feeds since the beginning (mainly in the form of retching) and the major uptick in these symptoms two weeks ago when we switched to Rehab.
Thomas had been on Clonidine for pain and sedation while in PICU and needed to wean off of that. The team wanted to wean him entirely off of Ativan first, which they did, and then get Methadone tapering for a while before touching Clonidine. Well, the time to begin the Clonidine wean coincided with our move to Rehab.
However, Clonidine is used not only for pain and sedation but to treat post-operative gastrointestinal neuropathy, meaning when the nerves have been sliced and diced so much that they are oversensitive and going absolutely haywire in response to any stimulation.
The hypothesis goes that we were actually unwittingly treating Thomas's neuropathy, so when we began to wean the Clonidine, we were stopping treatment and the true severity of Thomas's neuropathy revealed itself. When he is receiving tube feeds, he is having continual intestinal distension, which his body does not seem to be able to handle. When he eats foods by mouth, he self-moderates so as to avoid ever feeling distension. He eats only a few bites, then stops for at least 10 minutes, then maybe eats three more bites. It's that slow all day long, but this protects him from discomfort.
Thomas is on Periactin and Gabapentin already, both of which treat this problem and both of which he has room to increase his dose. The team is discontinuing the Clonidine taper and is, in fact, doubling the dose so it is at a treatment level for neuropathy. It takes at least 48 hours to build up effect, so no other changes will be made till next week.
The goal is to get Thomas to have zero to minimal symptoms and then reintroduce tube feedings, although probably at a very low rate and for short sessions. Controlling these nerve symptoms would also allow Thomas to eat more by mouth, getting closer to his goal of complete calories by mouth. He can't achieve that goal if eating three or four bites means he's reached his limit and has to stop.
The whole pancreatic drain issue is another looming one for which we await to hear a plan.
Novena
Source of St. Jude Novena prayer: https://catholicnovenaapp.com/novenas/st-jude-novena/#st-jude-novena
Day 7 Prayer
Intro Prayer
Most holy Apostle, St. Jude, faithful servant and friend of Jesus, the Church honors and invokes you universally, as the patron of difficult cases, of things almost despaired of.
Pray for me, I am so helpless and alone.
Intercede with God for me that He bring visible and speedy help where help is almost despaired of. Come to my assistance in this great need that I may receive the consolation and help of heaven in all my necessities, tribulations, and sufferings, particularly:
for Thomas to experience a complete and obvious self-sealing of his pancreatic leak without needing any surgical intervention,
and that I may praise God with you and all the saints forever. I promise, O Blessed St. Jude, to be ever mindful of this great favor granted me by God and to always honor you as my special and powerful patron, and to gratefully encourage devotion to you.
Amen.
Concluding Prayer
May the Most Sacred Heart of Jesus be adored, and loved in all the tabernacles until the end of time. Amen.
May the most Sacred Heart of Jesus be praised and glorified now and forever. Amen
St. Jude pray for us and hear our prayers. Amen.
Blessed be the Sacred Heart of Jesus
Blessed be the Immaculate Heart of Mary
Blessed be St. Jude Thaddeus, in all the world and for all Eternity.
(Our Father, Hail Mary)
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