After two not so great nights at home, I took Lucy back to hotel Children’s Mercy Sunday morning to be admitted. Violet was upset that Lucy had to go back, and when I called to tell her we are spending the night (and then some) she said “I figured that”. Poor girl, she knows the drill. Josh and I, on the other hand, were quite willing to bring her back. She was just miserable the whole weekend. Our dreams of Violet and Lucy playing together while we slept peacefully thought the night were replaced by the reality of Lucy crying in fits of rage/pain/?? and clinging to one of us constantly day and night. Thank God we were at grandmas because between the two of us, we were constantly attending to Lucy with medications, ointments, tube feeds and just holding her All. The. Time. It’s only thanks to grandma that Violet got fed and bathed at all.
The main reason we are back in the hospital is that Lucy’s rash is getting worse, despite steroid treatment. Steroids make her crazy so it’s disappointing that they aren’t helping her rash, especially when up to 80% of GVHD of the skin cases respond to steroids, or at least doesn’t get worse! Either this is some scary, aggressive, GVHD or something else is going one. We are praying for the latter. We are so grateful Dr. M was on the floor today, we got to skip the ER and go straight to a room. He is making some adjustments to her medications and we are actually really hoping she is having a drug hypersensitivity reaction and that finding the drug and eliminating it will finally bring her some relief.
Please pray for our girl to feel better soon. We really miss our happy Lucy!