Tessa Reed Shea's Documentary: Down time

Monday, November 14, 2011

Down time

After a very busy weekend, I was happy to enjoy a very quiet day today. I was pretty sleepy this morning and was a good girl for my nurse Joy...that is until this afternoon. I wasn't able to get in my 4pm feeding because I was up with seizure activity and respiratory distress and was not able to calm down.

Finally she gave me morphine and put me on my tummy and I eventually calmed down and fell asleep right as Daddy and Brody came home. That was good for Daddy because he was able to get dinner ready for everyone! Mommy came home a little later and her and Brody were playing right near me and singing me songs. I was so sleepy that I didn't wake up but I could hear them! Brody was kissing my feet and playing around me with his cars.

I was still asleep when my night nurse Beth arrived. I haven't pooped yet today so we will see how long I stay asleep tonight!

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.