Tessa Reed Shea's Documentary: O2

Friday, June 24, 2011

O2

Another day on oxygen:-( I had another pretty good night and was able to sleep quietly all night on my oxygen. My nurse Ines came this morning and Mommy was able to run lots of errands. I was having labored breathing again and Ines gave me a dose of morphine which helped right away. Then around noon I got a nice bath which put me to sleep!

After my bath, Ines noticed that my heart rate was falling and by that time Mommy had gotten home. We called my Hospice nurse Lynda and she stopped by to check on me. Lynda didn't have a reason why my heart rate was falling but did say my lungs sounded clear which is good. I will keep taking my antibiotic so we can rule out a bacterial infection. If I don't get better in the next day or two, we will know that my difficulties are just a progression of my disease.

Daddy is giving me my last feeding of the day. Then, I hope we all get into bed soon!

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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.