I can’t believe the big day is here! They call Transplant Day, Day 0, so from here on out, we start counting up. I almost feel like this is Kiira’s 2nd birth. It’s a new immune system, a new opportunity for her. She has been through so much the past 8-1/2 months and I want this to heal her more than I want anything.
Kiira started off the day happy and playful, but it was short-lived. She started getting naseous and ended up throwing up here entire meal shortly before transplant. We gave her a bath and did her bandages and then around noon, Kiira received her first portion of blood cells. The team came in with a balloon, present, and a sign for Kiira’s door signed by all of them. It really felt like a birthday party then! Since there are so many cells, they decided to split it and she received the blood in 2 doses rather than 1 and then she will get her MSC cells tomorrow instead of today. It’s much like a blood transfusion so she fell asleep as the new blood makes its way to her bone marrow, which takes 10-12 hours. How those cells find their home so quickly is beyond me, but thank God He made these things so amazingly perfect.
After the first transfusion, Kiira got more sick and lethargic. She started vomiting blood. We don’t know if it’s from a mouth sore or lower down in her GI tract, and unfortunately it’s common in EB, but still not something you want to see your child do. Since her little body received such a large portion of blood, her blood pressure went through the roof and her skin was very rosy. They gave her blood pressure medicine and another round of Tylenol and benadyrl before beginning round 2.
The 2nd round was supposed to happen at 6:45pm, but we didn’t start until about 9:30pm. She continued to get sick and just wanted to sleep through it all. Unfortunately, they also had to give her Lasix, a drug to help increase her urine output. It means constant diaper changes, so every time her diaper is changed, she would wake up and gag. It was a horrible night of sleep for Kiira (and her dad who stayed the night with her).
All of this is very common with everything Kiira has been through the last week, but I sure miss those smiles she always has for us. Again, I know it’s a phase, a normal response, but pray for her body to recover quickly and get those new cells to grow, grow, grow! She obviously isn’t able to eat anything so most likely they’ll move to TPN (IV nutrition). Again, this is very common and used just until they can start eating on their own again. I just want what is best for Kiira, so whatever they need to do, I am happy to have them do it.
Child and Family Services came by with gifts for Kiiira, most notably her Beads of Courage. Each bead signifies something she has gone through such as hospital stays, gtube placement, and her BMT. It’s already quite lengthy! They will also role play with her sisters to show why Kiira has all these lines and explain what a BMT is in a way they can understand. I’m excited to bring the girls in for that.
December 30th we decided to pursue this route and 6 months later, we are here. We are so happy Kiira has this opportunity. Praise God! While, I feel fortunate that we are here, but the road ahead will still be difficult. Please continue to pray for us.