Day +7: wow, we’ve been in the hospital for 2 weeks, but it doesn’t feel like it. With switching off nights, it feels like 2 different lives, so only half the time should have passed. Today we found out Kiira’s levels are so good that she might get discharged next week–we still have to stay in MN for at least 100 days, but we would get to be at home. These numbers were about 0 even a few days ago, and as I mentioned they can fall again, but the doctors seemed pleased:
WBC: 7.9 (normal: 6-17.5)
ANC: 6.3 (normal: 1-12.8)
Also, they rechecked her for CMV, and the level is so low, that they aren’t worried about my milk anymore. Praise God for both of those things!
On the downside, Kiira got sick a few times today and is super puffy again. The swelling might be contributing to added blisters, or could be all the extra handling. I noticed her respirations were high tonight and her temp is 99.5–not concerning yet, but we’ll be keeping an eye on her. Her hemoglobin is still a little high, but the plus side is she has not needed any transfusions.
She has also gained about 2lb in the last 3 weeks. We are moving up a size in diapers and some of her clothes. I don’t think we need to worry about malnutrition for this girl!
Overall, we are doing well and continue to take it day by day!
Also, I had you pray for Abigail–she is awake, alert and breathing on her own–a true miracle! She is still scheduled for her BMT in 15 days. So many RDEB/JEB families are now seeking out a BMT. I love that there’s hope for these kids!
