Tessa Reed Shea's Documentary: We have help!

Wednesday, May 25, 2011

We have help!

I feel like a broken record, but I had a pretty awful night last night. I went to bed fairly early with Mommy and Daddy but woke up around 1am feeling very anxious and having lots of seizures. That continued off and on until 5 or 6am. Mommy and Daddy had to suction me a few times and tried to constantly change my position but nothing seemed to work. They gave me Ativan every hour for a few hours and I was still having a really hard time.

Today Daddy and Mommy met with a few women who want to help take care of me. We met Marsha and knew she would be the perfect fit:) She is coming tomorrow morning to learn the ropes and help give Daddy some time to take Brody to school, run errands and do chores around the house. I will try not to be too hard on her...

No new news from the nursing agencies. They are still trying to find a full time nurse or two that will help take care of me once Daddy goes back to work.

Then my doctor and nurse came by to check on me. Daddy told them all the trouble we have had the past few days and I am now going to get Valium every 6 hours instead of Ativan as needed. The doctor doesn't think Ativan is working anymore. We will see if this helps.

Mommy and Brody came home and we all ate dinner together. Then we got to Skype Nana and Pop Pop Reed which was lots of fun.

After Brody went to bed Mommy gave me a warm bath. After the bath I got all snuggly in my favorite bunny towel. Mommy massaged me with my favorite Calendula lotion and I am now ready for a good night sleep!

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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.