Re: Audrey is Home!

[Guest guest]

HI Kathy:

My thoughts are with you and your family at this time. As Kass

had said, this is not what you wanted to see or hear. How is the

rest of the family handling these issues; the kids, Doyle? I'm so

thankful that you are there to help and be so supportive. As you

have read from other posts, there are several families out there that aren't

so supportive. I know being a nurse has helped, but just being there

is such a relief. I'm glad Audrey is doing OK. I know it is

hard to do, but if Amie can rest as Audrey rests, and yes that means letting

the house go a bit, it is so important for her well being to get that rest

to attend to not only Audrey but the rest of the gang too. Please

keep us updated on what is going on. As you know this is a very caring

group and it's like we are neighbors in the same town looking out for each

other.

Nerenhausen

mom to Leah

Dklboone@... wrote:

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 th! e 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

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