Tessa Reed Shea's Documentary: Home Alone

Sunday, February 26, 2012

Home Alone

Well not really, but Mommy, Brody and Daddy were out of the house last night and I got to spend special time with my nurses Ines, Heather and Tiffany! Brody spent the night with my great Aunt Marie and Mommy and Daddy spend a night away for their 6th wedding anniversary.

My respiratory distress has been pretty bad the last few days and I am still having some trouble laying on my left side. I am on a really high concentration of oxygen to keep my stats up which tells Mommy and Daddy that my lungs are probably in pretty bad shape. We have managed to keep my medications at the same level for a while now but are seeing signs of needing to increase them again. We will wait it out a few more days to see if there are any improvements.

When Mommy and Daddy got home today I took a nice nap with Daddy and Finnegan. Brody was sleeping too but I didn't want him sleeping in my bed since he is a very restless sleeper:-)

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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.