Tessa Reed Shea's Documentary: Don't leave me Nana!

Monday, May 23, 2011

Don't leave me Nana!

Well I had another rough night last night. I was awake from about 2am to 4am having seizures and very congested. Mommy and Daddy had to use the suction machine a bunch of times last night and today. I got to spend the morning with Nana while Daddy ran a few errands. Then my nurse Linda came over. I am normally really sleepy when Linda comes but today I was having trouble with my congestion and having lots of seizures.

She increased all my doses of medicine and now Mommy and Daddy can give me Ativan every hour on top of my Valium at night if I am really having a hard time. The doctor will be coming over on Wednesday to check me out. Daddy also set up some appointments to meet some people who are willing to take care of me in the mornings while Daddy takes Brody to school and gets stuff done around the house.

Today was Nana Reed's last full day with me:-( I will be sad to see her go but I am trying to get as much snuggle time as possible before she leaves...

It was time for me to eat again after Mommy, Daddy, Nana and Brody finished their dinner and I started out having a really hard time again. Mommy gave me a nebulizer treatment and that really seemed to help. I also got a double dose of Ativan and I was able to finish my dinner and I am now sleeping soundly! Hopefully my extra meds will help me get a good night sleep tonight.

Good night!

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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.