Day +51 | Paizlee Davenport Stem Cell Transplant
I wasn’t even going to mention it because I was scared I would jinx us, but I’m just praying we will dodge this with Paizlee. On day +51 Kruz developed GVHD from probably a mix of BPX cell infusion and a little sunlight, which sets off GVHD (even up to a year after transplant.)
This time around I literally have them covered in long sleeves, hats, mask, and a blanket draped over the wagon. 1. No sunlight to and from but 2. No germs in the hospital. I just explained it was their tent and this was their camp out- and they went for it 💁🏻♀️ 🤣 🏕
Anyways. Even though they are completely different kids, I still find myself comparing dates, cell counts, and mile markers.
But- Sister is doing amazing!
I’m so grateful.
She’s still making a little urine. Her kidneys definitely needed tremendous help. We’re still on 4 days a week for dialysis (M-W-F-S) and we are trying to get to where we can have Saturday’s off. So when we come home we can continue hemo dialysis three days a week (M-W-F) from here until it’s time for kidney transplant in early 2020. (She must have dialysis for several months to regular labs and bring down clotting factors before they can transplant Kyle’s kidney). We will go home & come back out for that.
Her potassium and phosphorus started creeping up so we started binders in her formula this week. I decant to pull the phos and potassium out of the formula before she starts her daily feeds, it’s helping.
And sister wore her new jammies today to dialysis to show her nurse friends. 💜