Tessa Reed Shea's Documentary: More Valium

Friday, August 5, 2011

More Valium

We had a busy house yesterday so Mommy didn't get a chance to help me with my blog post. The Dr. increased my dose of Valium to 3.5 mls every 6 hours to see if it helps with my seizures and anxiety. Then my brother came home and wasn't feeling that good so it was just a bit chaotic in the house. He did read me a story before he had to go to bed but I must say I am getting tired of learning about trucks and would rather read about princesses and dolls.

I was on oxygen again last night and the over the past few days I have needed oxygen for part or all of the night. I tend to sleep more soundly when I'm not struggling trying to keep my oxygen saturation up so we are probably just going to start to use it every night. My brother stayed home today with Mommy and I since he woke up with a bad cold. They went to the doctor while I stayed home with my nurse Ines.

We all got to take a nice long much-needed nap this afternoon. Brody still isn't feeling that great so we just vegged out on the couch after dinner together. I love snuggling and relaxing so that was alright with me:)

1 comment:

CarynAugust 8, 2011 at 1:07 PM
I think we all know a little too much about trucks - haha!
ReplyDelete
Replies

Add comment

My Story

I was born on January 18, 2011 and weighed 6lbs 14.5 oz and was 19.75" long. I was born with lots of fluid in me and no desire to suck or swallow. It wasn't until 12 hours after I was born that doctors started to worry about me. I had an MRI, CT scan and EEG and they discovered severe damage to the thalamus in my brain and diffuse white matter.

I spent a month at the Children's Hospital NICU and they sent me home with a nasal gastric (NG) tube because I still couldn't eat. I started to make a little progress drinking from a bottle at home (10 mls at a time) and then I got the flu and ended up back at the hospital.

It seemed like just after the flu I started arching much more than I had before and lost all desire to want to eat with a bottle. My arching episodes got much worse and Mommy and Daddy thought I had reflux or maybe a stomach ulcer from my NG tube. We scheduled surgery for a stomach feeding tube (G-tube), but ended up at the emergency room because I was arching so much and started to have trouble breathing.

When we checked into the hospital for the 3rd time, they gave me morphine to see if it would take away any pain I might be having from my NG tube. When that didn't stop my arching, they knew something else was wrong. They hooked me up to an EEG and found out that I was have lots of seizures, abnormal brain activity and something called hypsarrhythmia.

The doctors left the EEG on for several days to study my brain activity and my brain activity was something most doctors at the hospital don't see very often. That is when they diagnosed me with Ohtahara Syndrome and also a form of West Syndrome. The seizures are a side effect from my brain injury and my prognosis is not very good. Mommy and Daddy from the advice of some amazing doctors, have decided to bring me home to spend time with my family and experience as much love as I possible can.