Post Transplant Day 346
+346
Notice the huge jump in days? I regularly lose count. The real purpose for the count is it gives me a timeline. As long as I don’t go backwards, it’s all good. It was easier to keep track when I posted everyday. We are SO close to the 1 year transplant mark!
It’s feeding tube awareness week! Never something I previously thought about until Tate became a “tubie” over a year ago. A big step at the time that initially put Tate in a pain crisis, and contributed to an ICU admission. But a total blessing and one that we’ve never regretted. They come with their own challenges but It made transplant easier, preventing an NG tube (one down the nose,) gave an easy option for medication when the nausea/vomiting are too much for meds and got us through gut graft Vs. Host disease. Tate has both a G tube(in the stomach) and a J tube(into her small intestine.) We still use the J exclusively. There’s a valve in the intestine that prevents vomiting anything put through the J tube. Key with meds!! It is also an easier way to battle constipation caused by the dysmotility and will also be vital as Tate continues to work towards getting off her IV nutrition(tpn) and to get rid of the central line in her chest.
We had some BIG wins for Tate this week. She attended a church youth group event and had a blast! AND, I got a phone call tonight from her endocrinologist that Tate no longer has adrenal antibodies. This means that transplant did halt progression of Addison’s disease and she now has a chance for us to see if we stopped progression in time and if her adrenal glands are well enough to produce their own cortisol. This process will take a year to get to a place where we can even test, but if successful, it would mean no more emergency injections, daily steroids and stress dose steroids!! Hope is a beautiful thing!
Tate start’s Occupational Therapy this week (3 days of OT & PT therapy weekly plus appointments) and her pink wheelchair is on its way! We are seeing her getting so much stronger and continue to try to keep her spirits up as she continues battling pain and swelling.
Keira had another CT scan today. She continues with daily headaches and neurological symptoms. Her neurosurgeon wants to make sure nothing new is going on. We expect everything is fine but sure appreciate the caution and peace of mind. We’ll talk through results at an upcoming virtual visit.