Post BMT +47
Day 109
Post BMT +47
Today was busy! It started by us learning today was day 37 in our room and we had to move. Just two doors down made it pretty simple. We also got a call that Brent’s Place was ready for us. So I packed in 3 piles…home, Brent’s place and the new room. We’re praying our stay in this room will be brief so are not doing all the usual decorating.
GI came in to discuss pathology results from the biopsies. Tate has extensive inflammation all down her esophagus and into her stomach. She’s testing high for eosinophils of which you shouldn’t have any in these places and has furrows and rings in her esophagus. Dx is EoE. Eosinophil esophagitis. It’s an autoimmune issue in response typically to allergens…usually food. You don’t have to display typical allergic responses to food for your body to deposit eosinophils, eventually causing narrowing and strictures in the esophagus. It’s very familial and something both my sister and nephew have been diagnosed with. We have other family members that are suspicious for it but have never sought diagnoses. They think it could be contributing to Tate’s nausea and dysmotility. But of course are perplexed because her scope in October revealed none of this. So, a couple more tests to either rule it in or out.
Tates pain is getting progressively worse again and changing. A few extra labs will be run to look at complement levels ti see if this could be her lupus flaring. I’m praying so hard it isn’t as we want that to be gone.
Tate was dx with something called classical Ehlos danler syndrome right before transplant. We chose not to vet that out until after transplant. We’re now there as it’s a connective tissues disease that can cause pain especially in the joints. This one unfortunately won’t be helped by transplant but should be manageable with PT and some pain management. We were disappointed to learn of this new dx but are also hopeful that it will not be distressing once we get it figured out.
We met Tate’s new chronic pain Dr, saw her hematologist, Dr. Nakano , met with pain team, regular rounds, two types of therapy and Tim and I swapped so Keira and I could get checked into Brent’s place. It’s beautiful and we feel so incredibly blessed to have this option that we thought we didn’t want. God is funny like that. Giving us what we dont know we need! More on Brent’s place later.
Both Tate’s liver and gallbladder are ornery from the iv nutrition. We’re decreasing it and are hoping ti dc it soon as Tate is able to eat more. She started a new med today to hopefully help prevent stones also a new one for inflammatory pain.
The last bit of excitement was the Prom invitation Tate received. Run by the hospital for critically Ill teens, it’ll be held at the zoo. Aveda hair and makeup appointments, food and prizes, dancing and smiles all included. Tate gets to bring a guest and she and Keira are already dreaming about dresses. The girls’ aunt Jen runs a non profit supplying girls with prom dresses who otherwise would struggle to get one. You can bet the girls already have Aunt Jen on board. This excitement and “goal” is so needed. I am so very thankful for the timing of this night!
There’s a lot of positives here, but please keep praying for Tate. She can turn on a smile for a photo but has been pretty miserable the last couple days with increased pain and nausea. Still praying for discharge by the weekend!