Tessa Reed Shea's Documentary: Hard day

Tuesday, May 31, 2011

Hard day

I had a really tough night and today wasn't so great either. I had seizures for a few straight hours last night and was having lots of spastic movements too. I had to be suctioned countless times and it never lasted long.

Today was a lot of the same thing. Marsha came again this morning so Daddy could get chores done. She will be coming each morning this week to hold me:-) After dinner Daddy tried giving me hydrocyamine sulfate drops in my mouth to see if that would clear up my congestion and it seemed to help a little. I was able to fall asleep and relax. I have one more feeding to go and hopefully it is a good one!

1 comment:

jimchubbJune 2, 2011 at 10:54 AM
Dan&Jen We have been following Tessa"s and your struggle with emotions that can only be described as turbulent.Such a pretty girl so lovable so afflicted-how can one cope with hopelessness.
One never imagines that such a cruel blow will land on the best people and within your own family-We can only hope that you can find some way to alleviate her and your own suffering
We send our love Jim&Sue Chubb
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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.