Tessa Reed Shea's Documentary: Fever and...Oxygen

Saturday, September 3, 2011

Fever and...Oxygen

I have been very, very sleepy today and still fighting a fever. Mommy and Daddy are trying to keep it down with medicine, but it keeps creeping up. I have had to be on oxygen all day to keep my stats up. The good news is that I have kept all my meals down, but probably because I am a bit dehydrated from the fever. I hope tonight is better than last night since it took me a long time to fall asleep and I was up a lot throughout the night. Mommy and Daddy have been debating whether or not to call the Hopsice nurse since it is a holiday weekend, but we may have to tomorrow if I don't start waking up a little more.

1 comment:

John A.September 4, 2011 at 3:56 PM
Sending you our love Tessa.... you are always in our thoughts and prayers!

Love,

Uncle John, Aunt Eileen, cousins Kelly and Gannon
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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.