Tessa Reed Shea's Documentary: Bye Bye Pop-Pop!

Sunday, June 12, 2011

Bye Bye Pop-Pop!

We had a busy rest of the weekend. Yesterday evening Daddy and Pop-Pop went to the baseball game and Mommy's friend Gay came over to help with Brody and I. I was pretty good for Gay but even she noticed I was having many more seizure movements than the last time she came to see me. Mommy gave me my regular dose of Valium at 6pm and I was still having lots of seizures so she gave me a dose of Aivan too but that didn't seem to help. After an hour or so we tried Hyocyamine but that didn't help either. I started to calm down around 10 pm so Mommy gave me my feeding and I was able to keep it down. We both crawled into bed around 11:30 and I slept pretty late this morning.

I woke up to say goodbye to Pop-Pop. Brody and Daddy took him to the airport this morning but not before I was able to get a picture with him! Goodbye Pop-Pop, I will miss you!

Then this afternoon Daddy's friend Brian from Manhattan Beach stopped by along with Daddy's friend Jerry. Brian was in town for the weekend to enjoy some spring skiing. I forgot to get a picture with him but I won't forget that laugh! Thank you for visiting me Brian.

I had a tough dinner time feeding and am just now finally getting sleepy. Daddy is giving me my last feeding and hopefully we will all be in bed soon. I am looking forward to meeting the two new nurses this week and my Uncle Pat arrives on Tuesday!

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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.