Post BMT +57
Day 119
Post BMT +57
Tate is checking the boxes. We are on target for discharge Monday!
Yesterday brought big happy tears from this mama when Tate hit a “5” for her pain. A 5 is still significant pain, but she hasn’t rated her pain this low in well over a year. And that’s with no pca…but with just IV meds and patches.
Yesterday Tate also briefly went outside for PT! First time out after transplant.
Last night we started the g tube trickle feed. Despite using a pre digested formula and running at only 5 ml/hr, Tate had a lot of trouble tolerating it. We shut it off this morning and will try again for a bit tomorrow. It’s important to keep trying not for nutrition but to keep exercising the stomach muscles to keep them functioning and to improve function.
Today Tim and Keira came down with the dogs. PT took Tate outside and checked the box for Tates 150 foot walk.She’s slightly comical as she does it as fast as possible to get it over with while making everyone slightly nervous.
Tate and Keira did FaceTime dress shopping with their aunt Jen. Tate didn’t last real long, so K and I did most of the choosing. But dresses are heading their way for them to try on for the hospital prom. Thank you SO much to their Aunt Jen! This is such a blessing for them to not only look forward to but to do it together!
Tates outing was sandwiched by lots of sleep today. She had a little tougher day but is trying so hard to push through to ensure that she gets to leave Monday. Lots of teaching, coordinating Homecare for tpn and g tube formula and supplies, and prescriptions to be filled. The team up here is amazing. I keep asking what I should be doing, but they’re on top of it all! We were hoping by discharge tate would be taking more oral meds, but most are still being put through her G tube, which is completely do-able outpatient anyway. Baby steps are okay! We are so close to a huge milestone and are so so grateful! PTL!