Audrey is Home!

[Guest guest]

Hi all,

Once again I want to thank everyone for the many prayers and good thoughts while Audrey was in the hospital. They were able to bring her home on Saturday, but unfortunately things are still not good. She had a repeat MRI on Friday to compare it with the one done a little over a year ago and there has been much progression. The one a year ago was essentially normal, this one showed much atrophy of the brain and enlarged ventricles. What this means is her brain is like that of a very old person. They said this is just progression of the Mito and there was really nothing more they could do. She is on O2 24/7, without it her sats go down into the 80's when she is awake and into the 60's when she is asleep. Her heart rate also fluctuates a great deal. The agency that provides her nursing service is trying to find a second nurse to come in at night but they are not having much luck. They said there is one available but she is the one that Amie fired a while back so why would they want her back!?!? Audrey is doing OK. Very tired and sleeps a lot, and still very congested. She is still on antibiotics, breathing treatments and CPT. Amie is so tired but holding up pretty good. She really amazes me. She truly is my hero.

I have scanned through many of the posts but have not had time to ready them, but I want to say welcome to all the newbies, I am praying for all the families on this list to somehow find the strength to get through this horrible disease, and most of all, I want to thank everyone for their much needed prayers. You are all so wonderful and supportive.

I will try to keep you all posted, but when I am not working I am spending much of my time at Amie's being with Audrey as much as I can.

Kathy, grandma to Audrey, 29 mos