Tessa Reed Shea's Documentary: Hailstorm

Wednesday, July 13, 2011

Hailstorm

Nothing new to report today except our crazy weather. I was pretty good for my nurse Tiffany today. She gave me a bath which I slept through most of....

Daddy came home early today so he finished up my 5pm feeding and I was able to cough a bunch of mucous up which really made me feel better. I was then able to relax and sleep while Mommy, Daddy and Brody had dinner. That is when this HUGE hail storm started. Mommy and Brody took lots of pictures and I was so tired that was able to sleep through it. I did hear it since it was really loud.

Paula is here again tonight to take care of me. I am having a tough time with my last feeding and needing to be suctioned out a bunch. Mommy and Daddy are so thankful to have Paula here at night to help two days a week. We are still looking for one more nurse to help out with either Friday or Saturday night. Hopefully we get someone soon, but just two nights is a treat for Mommy and Daddy.

No comments:

Post a Comment

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.