Day +202: So obviously we made it home safely last night. We didn’t get the Epstein Barr Virus (EBV) results yesterday or even today, but I’m hoping to hear tomorrow. They decided to pull out the PICC line, because it’s a source of infection, but even just pulling it reminds me how brutal an IV infusion will be without it if Kiira ends up needing Rituximab to treat EBV. I’m glad my mom got a taste of what we go through this past week, because I’m not exaggerating about holding Kiira down while she screams when I write these posts.
The first 2 hours of the plane ride were rough, but I finally put my phone sound machine app up to her ear and held her pacifier in and she instantly fell asleep for the last 90 minutes. Our flight got in about 40 minutes late, and we got out to the warm Sacramento air, compared to -7 degrees in Mn and felt so hot! It was fun to experience the extreme cold and occasional snow there. The girls were asleep when I got home, but this morning they crawled in bed with me and Kiira was beyond excited to see them. I’m happy they love each other so much, but my stress levels increase with them all together because they tend to be rough with Kiira. Not that it was their fault at all, but in Minnesota we only had one bad blister on her foot and tongue blisters to deal with all week. She wasn’t even awake 6 hours today and she blistered fingers and fell on her face twice and cut it up in 3 places. *sigh*
We did get one test result back that shows Kiira has 7% donor cells in her skin from the spot they biopsied, which is a surprising improvement from 2% from October, considering her bone marrow engraftment has decreased. We don’t know what those donor cells are doing for her, but I’m sure hoping they start making Collagen VII so her skin doesn’t tear so easily.
A huge thank you to the families who provided dinner for us over the last week and even tonight. It is so nice to have one less thing to do. Thank you!! And thank you still for your prayers and words of encouragement. They really do help me feel at peace through all this.