February 5, 2026
Day 3
This morning started off better for Tate and by afternoon she looked pretty punky and has slept most of it. Tim was here and we got outside on this 65 degree day in February!
Our room door revolves constantly and today was no different. Tate throws on an eye mask and sleep headphones and can drown most of it out. This evening shes oddly dopey again. It’s discouraging and worrisome to see her that way.
Tate will get an echocardiogram at some point today yet I think and we are waiting on a million labs to come back.
The plan feels a little wonky to me, but we’ll see how it turns out. They’ll start reducing her stress dose steroids tonight to see how her BP holds over the next several days. There are no quick fixes to the underlying inflammatory driver and we likely won’t get an inpatient answer. The current goal is to get her to a safe place to go home. That’s actually a really hard pill to swallow in the chronic world. So often I wish for something acute and fixable.
But I know, acute illnesses are hard. Even acute hospitalization is hard. But one can give thanks that it goes away. Feeling a little sad tonight where Tatum currently sits. I can’t explain how it feels to her when she goes home feeling so so crummy. But I know it takes such a mental toll. The “she looks good” comments feel dismissive if there isn’t an understanding of what the daily grind really is like. Feeling a bit defeated tonight.
Tates beloved rheumatologist, Dr. Moore came by last night after her long day of clinic. She brought Tate a mini target basket filled with goodies-knowing her Target trips are always a goal on her feeling decent days. We are so grateful for Tate’s nursing team and her specialist team too. Her GI Dr came by today and I received a message from her neurologist. To have genuine care changes everything.