Tessa Reed Shea's Documentary: Fifth

Wednesday, December 21, 2011

Fifth

I was such a good girl last night for my nurse Darlene. I think it was because she gave me such a beautiful present for Christmas. Her daughter made me a sign with my name for my room and I loved it. I am so lucky to have such wonderful nurses.

Since I was such a good girl last night, I had to give my nurse Tiffany a hard time today. My rash returned in full force so my hospice nurse stopped by today to take a look and she thought it looked like Fifth's disease. It is really just a virus with the rash as the final symptom and should go away in a few days. Because my immune system is so compromised, it is very easy for me to pick up these things.

I've been keeping Mommy busy with laundry the last few days and today was not exception. After my bath, I ended up pooping and throwing up at the same time and I really made a mess. Luckily, we have a great washer and Mommy was able to get out all the stains!

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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.