Post BMT +45
Day 107
Post BMT +45
Yesterday was a very long day and I was just too tired for an update. The night prior, we were up all night to work through the clean out. It was slow going due to Tates dysmotility, but she made it! The scope went mostly as expected. I was super disappointed/frustrated/irritated? upon completion of the colonoscopy portion. If you recall Tate had absolutely horrid ulcers this summer in the lowest part of her colon and into/through her small intestine. We were really wanting to see what kind of scar tissue, strictures, and/or damage was left behind after they healed. However, due to “pooling” of fluids in that area, the scope was stopped at the top of the ascending colon visualizing only the healthy parts of the colon. Sigh. Ugh. Argh! Although it wasn’t BMT’s primary reason for this scope, it was on the docket with her non bmt GI Dr. and will likely have to be looked at again if GI issues persist. The upper endoscopy showed extensive inflammation and “unhealthy tissue.” Biopsies were taken both upper and lower and will be back Monday.
Tate tested positive for EBV this morning. Another virus that causes mono, and one most have, like CMV, can be dangerous in a post transplant, immunocompromised person. Her levels are low, and like the cmv, we pray her body puts it back to sleep.
Nausea persists but clean out helped enough that Tate tried a few bites of food today and drank quite a lot for her! Her throat is sore from what we now know is esophagitis, but also from the scope and biopsies. Tpn & lipids was turned down from 20 to 18 hrs/day. It’ll continue to be reduced as Tate is able to keep down liquids especially until it’s dc’d. We were able to decrease her pain pump again today. On the new schedule, she could be off it Tuesday or Wednesday. After that, she has checklists to complete for PT and OT and we can be discharged! I’m praying by next weekend!! She’ll continue with regular BMT appointments, labs, OT/PT and specialists appointments as outpatient. Her Dr’s dont feel like she’s ready to be so far yet, which brings us to Brent’s Place.
We have an apartment set for us already on Monday! It’s great timing as today is day 30 in our current room. You have to move every 30 days. We are hoping for a mini extension until discharge, but we can move things to Brent’s and only keep the essentials here.
Have a Blessed, Happy Easter!