Post BMT +43
Day 105
Post BMT +43
Today was a tough one. At 7:07 this morning, sweet Sean, whom you’ve been praying for, no longer has to fight his earthly battle. He is free of pain and suffering. Tears were shared today with nurses that cared for him. Their dedication is unending. They care for their patients like family and their hearts hurt for their patients like family. I cannot fathom 3 years after transplant…all the time spent here fighting to live, having to walk out of here without my child. Heart shattering. Pray for Jen and all Sean’s family. And pray for the staff that cared for Sean and so many others. They become our everything here and carry a unique set of burdens. ❤️🩹
We woke to some crummy labs for Tate. Super high glucose in her urine, elevated liver enzymes and white cell counts. Feeling extra crummy and her coloring supporting that. There are ideas of explanations for these wonky labs. Problems will reveal themselves and non issues will self resolve. BMT labs are read completely different than what we previously learned to navigate. In BMT, what is obvious is typically not a problem. Praying that remains true with these.
Tate is on day 3 of meds for her scope clean out. This morning an X-ray was done of her abdomen due to no cleaning out happening. It was speculated that maybe there just isn’t much to clean out. X-ray showed the complete opposite. It appears her gut isn’t moving anything through. So….an injection was given that is supposed to give instant results. It gave one episode of results accompanied by more vomiting. The nausea in conjunction with the clean out is almost unbearable for Tate. The only way through it has been sleep. We’re grateful some of her meds do make her extra sleepy. After no more success, another med was added. This one is about a gallon of fluid pumped through her g tube at 500 ml/hr. We’re going on hour 7 with very minimal results besides more GI upsets. If this all doesn’t work overnight, the scope will be pushed to Monday and this misery will continue through the weekend. It seems her gut isn’t functioning much at all despite motility meds. Add in some lasix as Tate is retaining more fluid, and if all goes well, we should be up all night. Praying the clean out helps squash the nausea and the scope gives us answers by ruling all the worst stuff out. Scope is scheduled for 2:00 tomorrow.
Hug the ones you love. Life is so precious and fragile.