Tessa Reed Shea's Documentary: Not good

Thursday, September 1, 2011

Not good

After Mommy and Daddy passed me off last night to Paula, I spit up. It had been a while since I had eaten but I must have not been digesting my last meal because I spit up a good amount. I needed lots of suctioning too and finally fell asleep early this morning.

I didn't really have a great day with my day nurse Tiffany either. I was awake a lot and having lots of seizures. While I am always having abnormal brain activity and seizures, they used to be internal and were not too obvious to most people. A few months ago I started having many more outward seizures that was mostly arm and head movements. Now I am showing more lower limb movements and they are much worse at the end of the day.

I started my last feeding at 6pm and Mommy had to stop within a few minutes because I had a big spit up. We waited for me to calm down and started again and I spit up again so we decided to stop. I got it all over Daddy again!!! Mommy took this picture just after and it really explains it all....not good.

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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.