Tessa Reed Shea's Documentary: Time will tell

Thursday, December 15, 2011

Time will tell

Mommy and Daddy talked to Dr. Gien last night and we are adding back an old friend to my medication repertoire...Versed. It didn't seem to work a few months ago but we are going to increase the dose and try it again. Last night it helped bring my heart rate down but didn't totally stop the seizures or put me to sleep.

Today it was really difficult to tell if the Versed was helping because I had two huge poops and that always stresses me out. I was awake for a while today and my brother Finny was helping my nurse to watch over me...

This evening I was calm with a low heart rate, awake, and only having mild seizures. I fell asleep after my 6pm Valium and have been asleep ever since. I think the Versed may be helping but we will know for sure in a day or so.

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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.