Tessa Reed Shea's Documentary: On my back

Tuesday, January 31, 2012

On my back

Where to begin....I've been pretty sleepy the past few days probably trying to catch up on the sleep I have lost the past few days. My fever has been off and on but my oxygen has stayed on good levels and my heart rate hasn't gone to high except when I'm trying to cough up some congestions or trying to poop.

I've also been tolerating my feedings and even been able to sleep on my left side and...my back! I haven't slept on my back in such a long time so Mommy and Daddy are trying to get me to lay on my back as much as possible to see if we can re-shape my rib cage and head but that isn't going to happen overnight.

Mommy took a picture of me tonight on my back with my head turned to the side. I still don't like to sleep with my head facing up in case I need to cough up some congestion.

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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.