Post BMT Day +90
Post BMT +90
Lots of appointments today. We saw pain and GI, PT and BMT. Pain worked on guided meditation with Tate. Chronic pain is a whole other ball game and this is a pretty cool way to “escape” it for a bit.
GI focused on the dysmotility issues. The feeling is that the upper GI gvhd is well controlled but the dysmotility has a ways to go. Tate will work weekly with the intestinal rehab team to work on J tube feeds and Gradually weaning the tpn.
Bmt appointment today showed ornery labs again. Electrolytes were more high than low today. New tpn was ordered and should help correct that. Tates Liver enzymes are high again along with some other non specific markers. Kidneys aren’t super happy either. They’re not sure exactly what is going on as she’s also had an increase in back pain the last couple nights. Tomorrow is PT and Thursday we are back with BMT. Hoping it all self resolves. It feels like we’re constantly on alert .
Tates skin gvhd is still present. We are back up to using the ointment 3 x a day again much to Tates dismay. It’s like rubbing Vaseline all over. But…we were able to decrease the systemic steroids by 10%, so this is the compromise to keep the skin gvh in check. A fair trade! Her skin is so sensitive. Scratching an itch is painful and leaves her with hot, red skin. The skin gvh is liters an itchy pain, but honestly fascinating physiologically.
We experimented with decreasing the anti nausea med this morning suspecting it was contributing to the migraines. Nausea was persistent and migraine was present. A failed experiment, but was worth a try. We’re trying to avoid another med to control the migraines, but it’s looking like the best option.
Blood pressure meds were doubled today and high glucose remains an issue….thank you steroids. So happy to be starting the slow wean. Praying the gvh stays quiet.
The weekend and todays events caught up with Tate tonight. She went to bed at 6:30 with a migraine…but after eating some noodles! Despite the above, she is still doing well! This is a marathon with mountains and valleys. We are encouraged by her progress!