Asking myself why

[Guest guest]

Stacey,

I'm Dawn, mother to . I do not know about cardiomyopathy or

the affects of the mito cocktail on your daughter, but I do know very

well the lack of sleep and the lack of understanding from the doctors

in the hospital. For the first year of 's life we were happy to

get what we got.Then we gained knowledge (which no hopsital staff

likes at all) to stand up for her rights as a mito patient.I know that

you wanted all of the eyes you can get to look and help your child,

which is so understanable. Even if this is at three in the morning, we

all say okay, please help us. But doctors need to learn that every

case is different and sometimes they have to adjust to special times

and considerations for Mito kids.We go to the hospital with all of the

mito info we think is pertinant to the situation ie:mito kids in

crisis and have them read it!!! Then, we say no to any resident

entering the room in the morning before our doc.They wake up the kids

just to check a heart rate so they can say they did it.Not

neccessary.We put a note on the door during naps. I have found nurses

to be very helpful and quiet during naps and in the middle of the

night.No one should feel pushed around by doctors playing god because

of our fears for our children. I'm so sorry that you have lost your

child. I cannot imagine the questions that would pop into my head. The

what ifs. But your knowledge will be very helpful to others. We all go

through this for a reason (sometimes hard to figure out, I know), we

all will come out strong and very knowledgable on the other side.Keep

looking for answers and your help to us all is appreciated. Again, I'm

sorry for your loss.

Dawn Myers

Mom to (almost three)

ComplexIII/IV mito

Bone marrow failure

Glutaric aciduria III