Tessa Reed Shea's Documentary: Finally

Tuesday, September 20, 2011

Finally

I finally had a really good day!!! I only had a few "Brady's" yesterday evening, as they are called in the medical world where my heart rate drops below normal ranges. My new dose of valium seems to be helping.

Today my nurse Joy was able to give me almost 16 ounces of milk and pedialyte and I kept it all down. That is way more food than I have had in a few weeks. I think I am finally getting back to my old self. I am still having lots of seizure activity but my breathing sounds a million times better and I am having some awake and calm moments which I also haven't been able to have in the past few weeks.

I am sleeping on Daddy while we wait for my night nurse Darlene to get here. Hopefully my good day repeats itself tomorrow.

2 comments:

John A.September 20, 2011 at 10:36 PM
Beautiful photo of Daddy and Daughter:)
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CarynSeptember 21, 2011 at 8:03 AM
Agree - great photo!
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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.