Post BMT +41
Day 103
Post BMT +41
In rounds every morning the docs rattle off Tates stats including what day post transplant she is. Today they said 41….sure enough, somehow I lost a couple days. Time isn’t real here. There’s no real timeline. I should pay closer attention to their summary
Tate spiked a fever last night which led to blood cultures, antibiotics and steroids for her adrenal insufficiency. She’s on Tylenol around the clock, so it poked through that but we haven’t seen it since. Viral labs were all negative today and cultures are sure to be as well. Tate presents like she did during a pre transplant Behcets flare….ulcers, severe all over body pain, fever spikes and nausea. Yet we are assured that she shouldn’t be having any of that because that immune system is now gone. So likely the above symptoms are all separate issues…the pain due to her chronic pain, residual from the MT8 and also from the classical EDS she was diagnosed with right before transplant. That one will remain and we’ll have to work through it in the coming months. The nausea and motility issues as well as the ulcers they are scoping for and will take some new tissue biopsies to rule out additional issues. Probably, Tate is continuing to pave her own roads on her own time and this will eventually all dissipate.
Mag infusions still needed last night and electrolytes still low this morning. Tpn is great in that it’s customizable, so perhaps labs overnight will be better by morning. Her dilaudid enteral “clinician bolus” was put back on her pump to reduce the toll on her gut. Others also were moved back to IV. Sometimes you have to take a step back to see the whole picture before you can move forward.
The endoscopies are pushed to Friday afternoon….that’s the way a hospital works. An “elective” procedure meaning non emergent will always get bumped….understandably. Her ulcers are healing but the team also wants it to assess sources for this refractory nausea and poor motility. I’m always hopeful that by procedure time things wil resolve and we can cancel. Clean out has started and Tate is continuing to receive lasix to pull some of the fluid off her.
Fun news in theory…Tate was cleared by epidemiology to go outside again. She can’t be in any public gathering spaces, but we’d prefer outside anyway. Now to get her feeling like she can tolerate it. I cannot wait to have her feel the sun on her face without being attached to a pole or pump. We will get there! All in God’s time!