Tessa Reed Shea's Documentary: Quiet

Saturday, December 3, 2011

Quiet

I had a reeeeaaallllyyy rough night last night. Daddy even had to help when my night nurse Heather tried for a while to get me to relax. I was coughing up a bunch of congestion and we couldn't get my fever under control again. Finally after a long time, I fell asleep. I was so exhausted from all the seizures and respiratory distress that I slept, and slept and slept until almost 1pm.

Mommy was so afraid to move me since I was so peaceful that she waited that long to change my diaper! I woke up and got changed, and coughed up a bunch of congestion. See if you can guess what is missing from the following photo....

My TUBE! I even got to spend two hours without my tube. It feels so great not to have that thing down my throat and taped to my face. Mommy and Daddy felt so awful because I had a tear in my eye when they were putting it back in:-( I've had it in since I was one day old so I'm getting used to it by now.

The house has been so quiet this afternoon because my brother is not here. He is up at Uncle John's and Aunt Marie's house since Mommy and Daddy are going to a work party!! My nurse Heather is here to take care of me tonight and lets hope it is easier than last night.

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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.