Tessa Reed Shea's Documentary: Night off

Saturday, January 14, 2012

Night off

Mommy took the night off helping me blog so her and Daddy could go out to dinner with my Uncle Jerry. My nurse Heather watched me last night and Nana Shea took care of Brody so Mommy and Daddy could enjoy their night out. I gave my nurse Heather a tough time last night. My seizures, respiratory distress and just plain discomfort lasted from 9pm to almost 4am. I had periods of restfulness but something always seemed to wake me up after a short time. I finally gave in around 4am and slept soundly until 9am when the distress started up again.

Nana got up early with me today and let Mommy and Daddy sleep in until 8am for the first time in a long time. Mommy and Nana gave me a bath while Daddy took Brody to his Saturday soccer class. I coughed up a bunch of congestion and then I gave everyone a surprise by pooping in the tub - what a mess I made! Mommy said she was happy I did it in the tub because if it happened after I was all clean that would have made her mad.

I was up and down all afternoon but did not have a fever all day. My feedings have been getting very difficult because my heart rate soars and I wake up as soon as someone tries to put food down my NG tube. Needless to say, I haven't got much food in my belly today.

After dinner I woke up and got to spend some one on one time with Nana Shea.

While I was spending time with Nana, Mommy, Brody and Finnegan were watching Cars 2 for the 5th time. Finnegan is usually skittish with Brody but he sure did snuggle up on Mommy and Brody's laps! Every once in a while he will snuggle up with me too.

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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.