Tessa Reed Shea's Documentary: Saturday

Saturday, July 16, 2011

Saturday

I had a tough night with my Daddy last night. I was awake a lot and needed to be suctioned every hour or so despite getting to sleep in between Mommy and Daddy. I had a quiet morning with Mommy while Daddy took Brody out shopping for shoes and groceries (not in the same store:-) I spent most of my morning trying to cough up some mucous and was having lots of seizures. I finally settled down in the afternoon after Mommy gave me some hyocyamine.

I spent the afternoon/evening with Daddy while Mommy took Brody to the baseball game - go Rockies!

I've been having a harder time with seizures and managing my secretions when I am awake the past few weeks. I feel most comfortable laying on my tummy so I can easily get stuff out of my mouth and not feel like I am choking. I also like that pressure of laying on my tummy when I am having lots of seizures. Mommy and Daddy may want me to try a new drug to help keep me calm but that is also going to mean I will sleep much more than I already do. We will talk about it with my Hospice nurse Lynda next week.

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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.