Transplant +6
Day 69
Transplant +6
It’s Trisomy 8 Mosaicism Awareness Day. Although Tate doesn’t fit the more common version (which is also rare,) she does have her own version.
We are back in the ICU. Mucositis worsened today, with it increased pain. We can’t see much more than her tongue, but it’s raw and bleeding and littered with sores. She’s been putting frozen baby teethers in her mouth as she can’t handle any liquid from ice, etc going down her throat. The mucositis is like poking a stick into the hornets nest of her underlying chronic pain. It just stirs everything up and makes her whole body ornery. What they are able to use for pain upstairs just wasn’t enough. She’s on a lidocaine drip now which helped her the end of December when she was here for New Years. Praying it helps again. It requires lots of labs that have to be run next door at university hospital. They’re working on making this more accessible but for now it isn’t used much here in Peds.
High BP, fluid retention and vomiting all continues.
Tate received a blood transfusion and another platelet transfusion last night. They run labs daily at midnight and transfuse/treat as needed. I usually check her lab results around 4 am when I can’t sleep. By then, they’ve often already run the transfusions. If our nurse is super stealthy I might not even wake up.
We have a wonderfully kind nurse tonight and are grateful! But we are already missing our sweet bmt nurses and our cozy room. I was so touched by two of her primary’s who came down to the ICU with us and were blowing her kisses and telling Tate they loved her. These are special people. So so thankful to have them caring for Tate.