Tessa Reed Shea's Documentary: Who has been sleeping in my bed?

Friday, October 21, 2011

Who has been sleeping in my bed?

I had an ok night and an ok day today but ok is much better than my horrible days....I have been awake a bit today and having some episodes of respiratory distress. My hospice nurse Lynda stopped by today and weighed me and I gained some weight - 6.65kg (14lbs)! I've been keeping feedings down but not getting as much as I was a few months ago. I try and eat as much as I can during the day because as usual, I can't really eat much in the evenings and overnight because my seizures seem to be much worse during these times.

I settled down for a little bit after dinner and my furry brother Finnegan decided to take advantage and sleep in my cozy bed!!

I didn't mind because I was sound asleep but he better get out when I am ready for sleep!

I am up now and having a tough time keeping my oxygen up and my heart rate down. Daddy is giving me a nebulizer treatment to see if that helps since I don't get my usual meds for at least another few hours. We may try morphine if I don't calm down soon. Mommy is pretty sleepy from a long week at work but it is her turn to watch me tonight so I don't foresee her getting much sleep. I will do my best but my track record that last few days has not been great...

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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.