Tessa Reed Shea's Documentary: Big Girl Chair!

Wednesday, February 29, 2012

Big Girl Chair!

Mommy and Daddy finally talked to Dr. Gien last night and we decided to increase my Valium and Morphine doses. Then to help while we wait for that increase to kick in, we also decided to give me two smaller additional doses of phenobarbital to increase the drug in my blood stream and help me calm down.

All of the changes seemed to help outwardly calm down but inwardly I am still struggling with something that is causing my high heart rate. We will see if over time my new medicine doses help to calm my heart rate down.

My therapist Siobhan stopped by today and dropped off a new chair for me called a tumble form chair. It is a special chair that allows me to sit in a recline that I feel comfortable with and is soft and cuddles around me. My nurse Tiffany let me try it out today and I sat in it for almost an hour!

It even helped me cough up some congestion I was holding on to for a while. I am going to try it every day and get more comfortable sitting up just like a big girl!

1 comment:

CarynMarch 3, 2012 at 2:53 AM
The chair looks comfortable and you do look like a big girl!
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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.