Post BMT +147
+147
Day 6
Up from 2am-5am, back up at 6 due to pain and neurological symptoms. This stuff is tough. Not a great start to the day.
Care conference happened at 2 this afternoon. The individual meetings I had today with team members as prep for the care conference were highly emotional and completely draining. Lack of sleep did me No favors in helping me keep it together today. I failed miserably. I actually opted to not sit in on the care conference. Care conferences are meant for discussion and when the topic is not understood with no set protocol, there can be lots of back and forth. Often it is easier for providers to discuss all the scenario’s without the parents there. I’m typically already aware of the possible outcomes so usually like to be in the mix. Today I couldn’t do it. I am too emotionally drained and far too fragile to remain composed in a CC environment. The summary was enough for me today.
The summary:
Tremors and movements are improving. They are still present and when you can’t see them, you can feel the muscles firing. But they are not as constant. We know the Benadryl helps and I noticed breakthrough tremors when her newly added zofran was due. Benadryl is proven, and I found zofran in a few medical journals and it’s correlation to helping tardive dyskinesia, so maybe!? Regardless, they help with nausea.
Because of the improvement in tremors but not other neuropsych symptoms, there is discussion that they are two separate issues, and the increasing pain & gut pain a third. There is a 6 month wait to get into the adult movement specialist at university. So, BMT with neuro, and GI are tabling the LP until next week to make sure they have all the labs covered (working with the adult movement Dr.-he just won’t “see” Tate,) and in case any other procedures need to be added while she’s already under anesthesia. GI and pain will have their own plans.
The most comforting words that I heard today came from Dr. Eissa, Tates BMT Dr. He told me that he wouldn’t abandon us to navigate the neurological on our own-even when Tates medical needs are no longer BMT specific. I literally sobbed. So much past baggage we bring with us. We don’t believe this is BMT related, but rather, residual pre transplant or new issues. We spent years pleading for someone to help Tate. Sitting in that space, watching her deteriorate and waiting each day to see where we would land was exhausting and we absolutely cannot live that way again. Tate can’t live that way again. So, digging deep for patience and stamina. And begging God for answers and direction.
Photos just because I can’t handle another sleeping, sick photo tonight. Better memories of a healthier Tate.