Tessa Reed Shea's Documentary: Me and Mr. Shmoo

Tuesday, February 21, 2012

Me and Mr. Shmoo

Well, last night wasn't too bad, but I finally gave my nurse Joy a pretty hard day. I have to keep Joy on her toes too ya know; just like Daddy :). Most of the morning and afternoon I was battling a low-grade fever, high heart rate, and some periods of low oxygen. Joy gave me some fever medicine and some extra morphine and by late afternoon I was able to finally calm down. However, it all started again shortly after Daddy got home. He gave me more fever medicine, valium, extra morphine, albuterol, and hyoscyamine to try and help me. He thought about throwing in the kitchen sink too, but I'm glad he didn't go through with it :)! After all that my fever went down and I was able to calm down again.

Tonight I had some troubles again with laying on my left side. I just can't seem to make up my mind about whether I like it or not these days. When Daddy put me on my left side I began to breathe heavily, but my heart rate wasn't too bad/high; for me at least; but when nurse Darlene got here and checked me over she heard very little air movement in my left lung. Daddy decided to move me back to my right side and that seems to have helped. My heart rate has gone down a bit more and Darlene was able to hear better air movement again. What can I say? I'm an enigma. Or at least that's what Daddy calls me. By the way, can someone please tell me what an enigma is? I am feeling a bit better now, so I think I'll try and catch a few zzzz's.

Oh yeah, Daddy took my picture today with one of my favorite stuffed animals.......Mr. Shmoo. Isn't he cute? Night, Night.

1 comment:

Tessa SheaFebruary 22, 2012 at 7:00 PM
Thanks for helping Tessa with the blog again Daddy! Brody and I miss you all terribly and can't wait to see you tomorrow.

XXXXXOOOOOXOXOXO,
Mommy and Brody
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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.