Post BMT +32
Day 95
Post BMT +32
Yesterday and today were a bit of a mix. Some really great things…..Tate took a loop in the unit with her dad while riding in a wheelchair! She worked on stringing her beads yesterday and opened the last of her Birthday packages. Thank you everyone!!! Her BP is responding to the new medication.
And some things are trending in a not so great direction…..more nausea, less eating, increased pain and fatigue. Tate’s labs are a bit off and Graft Vs. Host of the gut was brought up in rounds this morning. This is a complication when the donor cells see Tate’s body tissues as foreign and attack. It can occur in any body tissues. Tate is susceptible in her gut due to previous damage from the Behcets. Currently they’ll just watch for it and treat if it becomes necessary. Praying it isn’t behind the reversing of symptoms.
Cmv is still active. This is disappointing as common thought was it would be gone this week. The positive is that the number of copies hasn’t drastically increased, meaning her body is still holding it at bay. Prayers that by next Monday it is sleeping again.
Tate is still needing nightly magnesium infusions despite being on the oral mag. They don’t yet want to increase the oral amount as it can exacerbate GI symptoms.
GI symptoms are making eating enough tough. Boost and protein shakes were offered today as an alternative to formula. Tate was able to get in 1/2 a strawberry shake. A good effort, but the nausea made her calorie count even lower today. She wants to eat, she just can’t yet.
Tomorrow starts the pain pump wean. An Additional fentanyl patch was added today and tomorrow they’ll start oral dilaudid. If all goes perfectly, Tate will be off the pump in 10 days. Tough on the heels of increasing pain and nausea the last two days. Getting off this pump is a key component to discharge. Pray this goes well. We know the next two weeks are going to be really tough!
Lots of ongoing challenges but overall, by transplant standards, Tate is doing well. Giving thanks for the easy and the challenging knowing we don’t walk alone. ❤️🩹