Reaching out to a Community of Support

Day +42

By on

No blood products needed at clinic visit this week so far. His magnesium is low and he may need to get it bumped up through his IV at tomorrows visit, but he's eating a little better so I'm hoping it will go up naturally. 

Engraftment is still going on slowly with dad's cells now at 83%. Trevor is doing excellent on medication compliance. Prior to this, it was hit and miss. He hated it. Now he can down twenty pills at once. He still hates it but it's over quickly and he understands what's at stake; liver damage, GVHD, seizures, stroke etc. So he takes a ton of pills three times a day, with little to no complaints. I received some much needed support from the inpatient pharmacist before we were discharged, she gave me a custom cooler/pharmacy bag with so many useful goodies to help me organize and administer his medicine. This was infinitely helpful to me and priceless. 

Sunday evening, he got to see some of his homeschool friends! We stayed outside and everyone wore a mask. They played on the trampoline for about ten minutes until he got tired, then sat and talked. That was an amazing day for him and he's so greatful to have such great friends. 

Due to his immune system being compromised, he's not able to go to an outpatient physical therapy office, so his transplant team includes a physical therapist that works with him once per week at his clinic visit. They did an initial evaluation upon admittance, before transplant, plus saw him at least twice a week while inpatient. Upon discharge, they did another evaluation and compared it to pre transplant. His strength is impressive( dad said it's the genes) yet his endurance is low. So that's our goal until day 100 is to keep his strength up and to work on his endurance.

0 comments Comments