No big news today from the hospital – Maggie is about the same. I got her to crawl x 1 “step” today and she was whining about it the whole time. Getting her mobilized again is challenging and she’s lost a bit of her appetite tonight. Blood counts are steadily climbing (but still low), her lungs seem a bit better, but she has a terrible diaper rash despite my best efforts, and her CMV viral load is going up and she will likely need treatment soon, which makes it harder to get the fluid off her lungs and can harm her kidneys. But all of that we expected. Worst news of the day is that Grandma Baba has a cold and she is therefore banned from the hospital. I also learned that Duke has their own compounded diaper rash cream – UNC should totally do the same because a similar cream we got from UNC had a $600 copay! Sorry no smiles today to take a picture of. I hear that Kaya and Laney climbed a lighthouse, saw the Incredibles 2 and had a crab feast in Duck.
Please know that you are in our prayers! I think you are all incredibly brave. Tracy, you get MOM of the year!
I hope Duke’s Dandy Diaper Cream is a miracle worker. I feel so bad for Maggie every time she pees and poops.Ouch! I will miss you both until I get rid of this cold. I am going to rest..hopefully that will work some magic. Please tell Maggie, “Grow Cells Grow”.
Sounds like the big girls are having a blast at the beach!! Wishing Maggie a more cheerful day tomorrow.