Tessa Reed Shea's Documentary: Summer is here!

Saturday, June 25, 2011

Summer is here!

It was so hot today! My brother Brody got a new pool and he and Daddy were outside all morning setting it up. I was going to go outside too but it was too loud for me in the morning while they were running the air compressor.

I have been on oxygen off and on all day. This afternoon was the hardest part of the day for me because I would go through spells where I was trying to cough stuff up. When I finally was able to cough out stuff, I would relax and fall asleep for 20 minutes or so and then start the process all over again.

Overall, I have been much more awake today than the past three days so we are hoping that I will be able to be off oxygen soon:) Mommy and Daddy keep trying to take it away, but my stats usually drop below the safe levels and they have to put the mask back on.

So Mommy took a video of me and has been trying to upload it forever which is why my Saturday blog is soooo late. She finally was able to save it as a smaller file. Enjoy:-)

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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.