Tessa Reed Shea's Documentary: Worn Out

Wednesday, January 11, 2012

Worn Out

Mommy heard something she hadn't heard in a while from a night nurse, "It was her best nice yet"(a quote from Darlene). Mommy thought maybe I was getting better, but when she talked to my nurse Tiffany this afternoon, she found out that I had an awful morning and it took me a long time to settle down. My seizures seemed to really be effecting me, so she told Dr. Gien it was probably time for a medicine increase to help my seizures. We increased my phenobarbital and versed doses.

I woke up again with seizures and respiratory distress this afternoon and two doses of the Versed seemed to help this time along with a little fever reducer. I have now been sleeping soundly since 4pm which is a very long time for me these days.

I think my sleepiness is because I am totally worn out from this morning and afternoon! Mommy and Daddy love to see me resting peacefully. It is so difficult both emotionally and physically for everyone when I am having a rough time with the seizures and respirations.

My surprise guest arrives tomorrow and I can't wait to find out who it is....

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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.