Post BMT +36
Day 99
Post BMT +36
Tate has been awake for all of 45 minutes today. Just long enough to get her mandatory theraworx and linens changed. So….you get sleeping Tate again tonight.
I’m honestly happy it’s Friday night. We are ready for a couple days to decompress from what felt like a long week. In reality, I’M ready for that. Tate has slept this week away. The last few days I’ve watched the nausea increase, sleeping increase, pain increase and eating and drinking decrease to almost nothing. Transplant numbers still look good, but Tate’s body is struggling to mirror those numbers and move into the next phase.
Yesterday she woke with an ulcer in her mouth and today confirmed a couple in her throat. This sets me completely on edge as these are hallmark behcets ulcers and one of the major diseases we are praying transplant eradicated. Nobody knows for sure as this is uncharted territory, but we are hoping this is just antibodies working it’s way out of her system. Temp has been flirting on the edge of fevers which indicates her body is trying to fight the inflammation.The biggest issue with these currently is infection risk.
Fatigue is drastically increased. She struggles mightily to walk 10 feet to the bathroom and back. Her labs are starting to indicate malnutrition again. The plan is to put her back on tpn (IV nutrition) to hopefully give her a bit more energy. She’s just too nauseous yet for G-tube feeds.
Tate has done a good job with the daily decreases in her pain pump meds. Tomorrow we will take a break from turning it down to allow her body to adjust as it’s been hard on her.
Enteral mag was increased yesterday and she still needed a nightly infusion. Hoping it all levels off and tonight is a bit quieter.
Brent’s place (where we are supposed to go next,) is full. We are praying there are enough openings in the next week or so to get us a spot as we are currently 3/4 on the list. Tate has a bit of progress to make anyway, so the timing may end up just about perfect.
Lilly needs prayers again. She should be getting out of the PICU tonight onto a regular floor, but had a really scary day yesterday and seems to be fighting inflammation and/or an infection. Tomorrow is her senior prom which she’ll now miss, so her childlife specialist transformed a room for she and a few friends. She’s missed out on so much. Praying she finds joy in the evening anyway. We you Lilly!