Avigayil was readmitted yesterday to be put back on vapotherm ventilation. She is switched over but has been having a rough time. In general she doesn't recover well from anything and this was a major change.
While this is a major setback for her, I know that this is what she needs right now. When they first brought in the machine I had an unexpected rush of emotions, not because of the setback, but because of the machine itself. For months this machine was my enemy and my best friend. It kept my baby alive, but it kept her in the hospital far from home.
This time around, hopefully things will be different. We are hoping to get the home machine appoved quickly and to see improvement from it. After months of seeing no improvement in her condition and weeks of watching her deteriorate we are holding on to what we hope will quite literally be a lifeline for her.
Please keep her in your prayers.
Hi, I was trying to see if I could find your e-mail anywhere. Have you looked into Alyn Hospital? It's a pediatric hospital specializing in rehabilitation after surgeries and trauma, but it also has a ward for Respiratory Rehabilitation. http://www.alyn.org/services-directory/departments/respiratory-rehabilitation-department
ReplyDeleteI don't mean to offer information if its not wanted, but just figured I'd share.