Tessa Reed Shea's Documentary: Another Tough Day

Tuesday, September 13, 2011

Another Tough Day

Mommy took a break from posting last night since we had a new night nurse who I loved! She came to help out last week and again this week and we just heard today that she thought I was so sweet and cuddly that she wants to come back one night a week on a regular basis. Yay!

Yesterday I slept most of the day, probably because I was worn out from Sunday. I was able to keep most of my feedings down except for the last one. Today was the complete opposite. I was awake almost all day and had a very difficult time again with my feedings. My nurse was able to give me only a 1/4 of what I normally eat. I took another steam bath today to see if that would help the congestion, but it only made me cough up congestion...and my entire meal I had just eaten. My fever hasn't come back in two days now which is good news ;)

Tonight I have a new night nurse named Darlene just like Nana Reed! She seems very sweet so hopefully she gets used to me quickly and we get along great. Mommy didn't get a chance to take a picture of me today, so she took a video a few days ago when I was starting to recover from pneumonia that she wants to share. The only problem is that the video is upside down and she can't figure out how to rotate it....we need my cousin Jason here to help her. For a better viewing experience, please rotate your computers 180 degrees:-)

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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.