Day +69 | Stem Cell Transplant
& Update on Paizlee
Kruz’ potassium is low (2.7) we added a supplement for it & starting it tonight, repeating labs on Wed.
Came down on steroids to treat GVHD.
He got to come back to RMH ❤️
He’s super emotional lately and puffy- All from steroids.
Working on getting him in to PT, possibly a walker or something to help with his strength.
Oh, I could make this so super long and I have a lot I want to say-express- Lots of emotions...
She’s headed towards bone marrow failure. It’s only functioning at 40%. Not incredible low like Kruz’s (5%) but it’s low. Thankfully, Kruz’s biopsy in January prompted everyone to check for Paizlee since his shocked everyone. Thankfully we have some time and able to make decisions. She’s stage two kidney disease. They don’t think she will make it through stem cell transplant without kidneys failing during - then your looking starting dialysis for the first time on a neutropenic kid. Scary. But waiting.... well we know her bone marrow is failing.
Only thing Kyle & I want is whatever is safest. If that’s waiting, so be it. I just never want her care put off bc so much is going on with Kruz. God will work it all out. I try not to let me mind get ahead of me. One day at a time.
Just continue to pray. Pray for the medical professionals making the decisions.
I told our stem cell doctor, Dr. Alice today that I trust her. I trust her with the two most precious gifts that mean more to me than anything in this world.
Thankful we’re in her care.
I trust the process. 🙏