Post BMT Day +69
Day 131
Post BMT +69
Today started out quiet and quickly turned super busy. As of rounds at 11, the PROM dream had died. Concerned about the full body tremors, a neurology consult was placed. J extension still not here, lots of discussion about what is best for her angry GI system. That and normal med adjustments and tweaks to nutrition etc. some extra labs ordered and there was just too much still being tweaked to think about discharge Thursday.
About 30 minutes later, we were given a glimmer of Hope. Neurology came in for their consult. It was decided as Tate is leaving on 20 hrs day of tpn and lipids, getting her going on j tube feedings, although ideal, wasn’t necessary to discharge. But literally I heard lots of “ugh” with trying to scramble to organize training sessions for me, home health training sessions here, supply deliveries to Brent’s place and nurse visits there. Thankfully we had already ordered in the compounded meds with the last pending discharge, so we have the Easy ones to move from IV to enteral. A lot of organized chaos ensued.
In the midst of all this, Tate didn’t feel super great today with increased nausea and last minute neurology ordered a brain mri to offer a little more clarity on the tremors. But….she did a Ruffles photo scavenger hunt ending with Ruffles live and in person, and Tim was here to be the one to help her through the MRI. Due to the last minute scheduling, dogs and handlers were gone for the day. BMT childlife broke her wrist, which left Tim. If you know Tates history, she’s had a lot of these. But most have been under anesthesia due to a traumatizing experience with a med reaction way back when she was 8. These are tough for her…especially last minute. Say a prayer that she’s getting through it. Only one parent allowed.
Tomorrow morning meds Tate will need to tolerate moving the IV meds to oral as some can’t be crushed. MRI needs to be clean and most importantly, everyone needs to feel good about her status to discharge. But everyone really is under the same belief that if she can just make this prom, even if it means coming back, it’s worth it. It’s been a goal for weeks now and Tate has worked hard to check the boxes. It IS a lot to leave with and my head is swimming a bit as well. But the support and resources are in place and being at Brent’s….so close to the hospital is a comfort!