Tessa Reed Shea's Documentary: Happy 4th of July!

Monday, July 4, 2011

Happy 4th of July!

I am sitting here with my Daddy and listening to the fireworks-Happy 4th of July everyone. Today was a hot one here in Denver. Mommy, Daddy and Brody ran lots of errands today while I stayed home with my nurse Joy. I had a pretty good day today. I was really worn out and slept a lot today since I was having lots of seizures and awake time yesterday. I slept with oxygen again last night. Daddy was having to suction me out every hour or so to keep my oxygen saturation up, so he decided about half-way through the night just to put me on oxygen. Then he could get a few consecutive hours of sleep in between having to suction me out. Tonight is Mommy's turn:)

No pictures today - sorry. Mommy, Daddy and Brody were going to bring me over the neighbors house for a BBQ, but I ended up having to stay home because I was having my normal difficult evening. Mommy even dressed me in my pretty picnic outfit....oh well, I will just have to wear it out another day.

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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.