Tessa Reed Shea's Documentary: All Hallows Eve....

Sunday, October 30, 2011

All Hallows Eve....

It was another tough night in the Shea house. I went to bed early with Mommy but we were up every hour or two trying to get me settled or comfortable. I was having lots of seizures and much more mucus than normal so Mommy was doing lots of suctioning all night.

This morning, Mommy and Brody went to his friend's birthday party so I got to hang out with Daddy! I slept until about 9pm and then was up having problems again. It is so hard to tell when I am sick because I always sound like I have lots of congestion, but I just haven't been myself the last few days. Plus I woke up this afternoon with a slight fever. Mommy and Daddy will be monitoring it to make sure it doesn't go much higher...it is around 100.6 now.

Brody put on his costume again this afternoon to go over to the neighbors house and was modeling for me....

I will get to model my halloween outfit tomorrow. Mommy wouldn't let me put it on in case I decided to had another HUGE poop:-) Daddy got to finish carving his pumpkin today and I must admit, he gave Mommy a run for her money!

I am asleep now but I'm sure I will give Daddy a rough time tonight. Only two more Sunday and then my new night nurse starts! I got to meet her on Friday and she seemed very nice.

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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.