up & down

happy girl awake

Alex was taken off the BiPAP this morning so we could get her up in a chair and moving around. She enjoyed this (considering she's been laying in bed for over two weeks) and her carbon dioxide level did come down some late morning.  She's doing great while awake but sleeping is a whole different story.  It's as if her little airway collapses when she falls asleep and air is not moving around the way it should. The BiPAP helps keep her airway open or at least that is what it's supposed to do.  They've been having issues finding a mask that fits well and finding settings that sync with her breathing to help her. If it's working against her own breathing, it can actually feel like it's suffocating her.  We are also starting a course of steroids which will hopefully help with inflammation but she does have the "behavior" side effects as they like to call it which really means she just goes crazy and is a mess.

The stress levels are at a high and seems we are moving in the wrong direction. The hard part is so many things are being pulled out of the hat with the hope that something will help but none of them are without consequence. Alex handles all that is thrown at her like a brave little soul that she is and hardly ever puts up a fight. When she was up in her chair the only thing she wanted was to go say hi to those outside the glass door. She really is so sweet even when she doesn't feel good.

big bad BiPAP