Tessa Reed Shea's Documentary: Work-day for Daddy!

Monday, June 20, 2011

Work-day for Daddy!

I had a really tough night last night. I spit-up my entire 8pm feeding more than 1/2 hour after I finished eating. It was pretty scary for me and Mommy and Daddy had to suction me out a few times to clear my airway. I was able to fall asleep after that but was then awake a few different times needing to be suctioned and having seizures. Around 4 or 5 am I finally relaxed and fell asleep.

Daddy had his first full day of work today. I missed him a lot:-( It was a busy Monday for me here at the house. My nurse Joy came early this morning and then my physical and occupational therapists came to meet Joy and show her some stretches and things to help me relax. Joy gave me a bath and then my hospice nurse Lynda stopped by to see how I am doing. She increased one of my night time doses of valium to try and help me sleep.

Then Mommy and Daddy came home from work and Daddy, Uncle Pat and Brody went out to dinner while Mommy and I snuggled on the couch. My Uncle Pat leaves tomorrow - we will miss you! Thank you so much for coming to visit us.

Thank you Susan for my pretty outfit. I got so many compliments on it today:-)

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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.