Tessa Reed Shea's Documentary: Uncle John is Here!

Tuesday, April 26, 2011

Uncle John is Here!

Last night was very difficult for me. I slept with Mommy from 10pm to 2am and then Daddy took me. I was grunting and having seizures and could not sleep at all so Daddy had to sit up with me to get me to calm down. They used the suction machine a few times to help me clear my nose and throat.

My hospice nurse Linda told Mommy and Daddy to try and get a few doses of Ativan before bedtime in me and she increased my dose of Valium again since it still doesn't seem to be working consistently.

Uncle John arrived early this morning to meet me and help Daddy take care of me once Nana Shea leaves. I was able to get some good snuggle time with Uncle John this afternoon!

This afternoon, Mommy and Daddy went to visit the hospice inpatient facility in Lowry. They said it was very nice and me, Mommy, Daddy and big brother Brody can stay there together. Not sure I will ever stay there, but we wanted to see what it looked like and keep it as an option for the future.

Then after dinner, a beautiful rainbow appeared. I wanted to find the pot of gold at the end of the rainbow, but it was raining outside and Mommy said it was too wet and chilly for me to be outside...bummer:-(

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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.