Tessa Reed Shea's Documentary: Short one

Friday, May 27, 2011

Short one

This will be a short post because I am pooped! My nurse Linda visited this morning. I only gained 0.02 kg this past week which isn't much but Linda said that is better than losing weight! Then my therapist Neala stopped by. We did some stretching and movements and then we decided to try out my car seat again to see if I would tolerate it. I sat in it for a few minutes but started to get a little nervous so Mommy took me out.

I had a pretty tough afternoon with my congestion. I have been able to cough up a bunch of stuff but my seizures seem to start up and just cause more congestion....and the valium doesn't seem to be helping this evening either. Mommy and Daddy gave me an extra dose of Ativan and I don't think it made any difference. Daddy is having to use the suction machine to help keep me comfortable.

Hopefully I can get some sleep tonight. I am looking forward to the long weekend with my family!

1 comment:

glisMay 30, 2011 at 1:39 PM
Hi Tessita, I am sure that therapy made you feel soooo good! Who doesn't like a massage?

I am sure you know by now how loving your mommy and daddy are. Hope you are enjoying this day off with them and your cool bro!

Glis
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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.