Tessa Reed Shea's Documentary: Pretty Awful

Tuesday, February 28, 2012

Pretty Awful

I have had a pretty awful night and day again today. Extra doses of medication don't seem to be doing the trick and my heart rate has been through the roof almost all day.

Usually when Mommy and Daddy get home I am asleep but today was the complete opposite. I got my normal dose of Valium and Morphine at 6pm and it has been non-stop seizures, heart rate in the 180s and 190s, non-stop suctioning and piles of medications ever since. It is almost 9pm now and my heart rate has come down a little but I am still awake and having an awful time. We are waiting to hear from my doctor tonight and see what we can do. If we don't talk to him Mommy and Daddy might have to play pharmacist.

Mommy got a picture of me for the two seconds I was asleep today. I don't look so great in the other photo but I was really having a hard time. My normal snuggle with Mommy didn't even calm me down.

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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.