Post BMT Day +79
Post BMT +79
Last night consisted of nausea and chest pain. Tate woke to vomiting and didn’t get a break all day. Our non scheduled clinic day consisted of labs showing low electrolytes once again. Infusions and lots of “consulting” and tests kept us there until 6 PM.
Tate escaped admission once again by the skin of her teeth. Glucose was way high, potassium way low and wbc/lymphocytes continue to climb. A double infusion of potassium brought her up to where they think she should stay above critical low levels through the weekend. They aren’t sure why she’s dropping daily. They adjusted her tpn drastically but due to the weekend, she won’t start the new formula until Monday night. Tate had an abnormal ecg and elevated bnp. These are heart rhythm and function tests. They believe both are off due to the struggles with her electrolytes all week. They’ll retest Monday.
High and climbing white counts and specifically her lymphocytes indicate her Graft vs. Host of her GI tract is out of control and not responding to the topical/drinkable steroids. So we switch to the dreaded systemic big guns. Tate does not do well on steroids, so we are praying a burst will get her where she needs to be and she doesn’t need to be on them long term. Most importantly, we are praying this takes care of the nausea, vomiting, worsening stomach pain, ulcers and chest pain.
The other GI dysmotility issues will be addressed by GI next week.
We are also seeing Tates dysautonomia/POTS rearing it’s ugly head again. She struggling with blood pooling in her feet and legs again as well as feeling lightheaded and elevated heart rates. I was really praying this would disappear with transplant, so am working through the disappointment that at least for now, it’s still battling to be seen.
Migraines will be addressed by pain team next Friday.
It’s snowing! A lot! Looking forward to a quiet day in tomorrow where our people interactions are limited and our day is whatever we make of it. I think we’re both beyond exhausted. Tate physically and myself emotionally. Thankful to be sleeping out of the hospital, but have to admit the idea of a night where her real nurses answered her call light is awfully appealing. Nap’s tomorrow!