Tessa Reed Shea's Documentary: Worn Out

Tuesday, July 5, 2011

Worn Out

I think I am starting to wear Mommy and Daddy out at night. They have been taking turns with me at night and I am needing to be suctioned out every hour or two throughout the night. We have gone a while like this and I think they are going to start having a nurse come at night to take care of me a few nights a week. We have to put a request in to the nursing company and it may take a few weeks for the nurses to become available.

I had a pretty good day today with Joy. I didn't need any oxygen during the day and tolerated all my feedings. I was able to sit with my brother for a few minutes this afternoon and play with some of his cars. He loves showing me his different toys....especially his cars.

2 comments:

John A.July 5, 2011 at 11:43 PM
Very cute..... Miss you Tessa and Brody:)

Love,
Uncle John
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glisJuly 7, 2011 at 8:45 PM
What a great, big brother you have Tessita!
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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.