Post BMT +64
Day 126
Post BMT +64
That cup of coffee made me feel so loved and supported today. I opened my eyes and in walked Dr. Michael with a cup of coffee for me. He’s no longer on our service as he’s now rotating in hematology. But…he checks in weekly and as a father of two littles and a husband, he still finds a place to love all the kids and families he cares for. He’s an amazing human! Grateful!
Had to get a picture with Tates eyes open today which didn’t happen for long. We’ve figured out a good system to prevent full on vomiting. But as the picture shows, she’s borderline all day long. Lots of extra labs run today as there’s some trends the BMT team is watching closely. Tomorrow’s procedure is at noon. Tate will be put to sleep for an upper GI scope and biopsies as well as changing out her G tube for a G/J tube. This tube is longer and will curve around into her small intestine. We’re hoping it helps with nausea and vomiting bypassing her stomach and also with med absorption. It’s usually done in interventional radiology, so we’re hoping tomorrow’s placement is successful while Tate is already under anesthesia.
Tate had a reaction tonight to the erythromycin. Despite being on gallons of around the clock Benadryl, she’s getting itchy with raised red areas where her skin is touched. I’m actually allergic to this med and mine started the same way. It’s almost reassuring to know her body responded in a way someone from her families does too! This med was for gut motility and wasn’t helping anyway, so not a huge loss.
We are looking forward to tomorrow. Praying for concrete answers from the tests and praying for the G/J to bring us closer to some kind of functioning system.