We are home from St. Joe's. (my bed feels really good underneath me as I type after 4 nights on a pullout chair!)
Bella is tolerating feeding through her feeding tube and pooping like a champ.
Mommy got to hold her yesterday and today.
Bella opened her eyes and looked at mommy while being held for the first time today.
We came home without Bella. That was rough. Seeing the empty car seat and having to unpack her coming home outfit and clothes...breaking points. Bella doesn't feel real...even when we're with her, we can't touch her. They keep her sedated so she won't move around too much and cause new blisters or exacerbate existing ones.
Doctors seem in no hurry to do the biopsy...short term care isn't going to be impacted by results...only her long term prognosis...which is what we'd like a glimpse of. The spectrum of this disorder is so wide...from superficial to fatal. The flipside is that it forces us to stay present and savor every moment we have and every little sound Bella makes.
The Tx team is trying to keep Bella's wounds clean and healing and infection free. Some blistering is getting better, some is getting worse. Both hands are now bandaged due to blistering on the outside of her fingers.
We're home and we're exhausted. We have to pace ourselves; this is most likely a marathon, not a sprint.