Re: the streak ends.-Darla.

December 4, 2004

I sorry to hear about Hollister. I recall you telling me about him a while

back. I hope he continues to recover.

We were in the PICU until Thu. afternoon and then transferred to the 3rd

floor. Dr. Gerdes was the intensivist while in the PICU and I cannot recall

the doc's name from the 3rd floor. I want to say Dr. Metts. He was an

attractive man with a scruffy beard. I thought he was very nice and

thankfully realized that I could take care of Lindsey at home just the same

as I was in the hospital. The resident had spoken of keeping us around

until she was baseline. She's not going to be baseline for a while yet so I

am thankful we were able to come home.

Lindsey is very slow to recover from this one. I am praying it's just the

medication and she didn't suffer any long-term damage. We just happen to be

going to Omaha next Friday for a routine EEG so we'll see what's going on.

They had talked of doing another MRI but, our neuro didn't think that was

needed since we just had one last month.

I was very impressed with the whole process. All of the docs were eager to

learn about our case and wanted to document their history and have

everything ready for the next time we are in.

I hope your girls are doing better and you are rid of the nasty viruses!

Kim

the streak ends...

>

> Hello all. Just wanted to let you know that Lindsey ended her 14 month

> " big " seizure free run on Tuesday. We traveled up to Mayo to meet with

> Dr. Whiteman and had a good visit with him. We got home and 10 minutes

> later, Lindsey went into a status seizure. It came from nowhere. One

> minute she was walking around giving everyone hugs and kisses hello and

> the next she was having a horrible seizure.

> We transported her via ambulance to the local Children's hospital and

> spent the next 2 1/2 hours trying to get her to stop seizing. Finally

> after giving her enough ativan, versed, valium and phenobarbitol to knock

> out a herd of cattle, she stopped. They had to put her on a ventilator as

> she couldn't keep up with breathing given all of the medication she was

> given. She did have another seizure later that night but, it was pretty

> short. She spiked a fever during the night and ended up with an ear

> infection. Miraculously all of her labs came back normal, even her

> metabolic labs.

>

> So, 3 days later we are finally home. Lindsey is still trying to wake up

> and get the nasty meds out of her system but, is coming along slowly.

> has been able to stay seizure free through all of this and was most

> excited to see her " sissy " today. She dogpiled her when we got home. It

> was a very sweet sight to see. She really missed her.

>

> Darla if you are reading this, we were at Blank Hospital and I was very

> impressed as a number of the doctors actually knew what a mitochondrial

> disorder was and even asked me what type she had. You must have trained

> them well!!!

>

> I haven't had time to read my 400+ e-mails and get caught up on the

> happenings but, continue to keep you all in my thoughts and prayers.

>

> Blessings,

> Kim - Mom to and Lindsey (3) Partial Complex I

>

December 4, 2004