Tessa Reed Shea's Documentary: Results

Saturday, January 7, 2012

Results

There has been a lot of discussion and heartache going on in the Shea house the last few days. Mommy and Daddy spoke with the doctor on Thursday night and the results from my blood work surprised us all. We were expecting results to show that my liver was failing but results were just the opposite and mostly everything came back in the normal range.

The one thing we held off on sharing in Thursday's post was that my chest x-ray showed that I now have pneumonia. The fever I have been fighting the last few weeks is not getting better and now we know why. Doctors prepared Mommy and Daddy a long time ago with the fact that aspiration pneumonic was not just a possibility, but a very probable infection that would eventually take me from them. I've fought colds, the flu and other infections, but this is most likely one that I will not be able to fight off. Dr. Gien was surprised that I was maintaining my oxygen levels and we were able to manage my fever so well given what he saw on the x-ray.

I seem much more sleepy to Mommy and Daddy the last week or so and appear a bit weaker when it comes to coughing up congestion. Right now I am resting comfortably with Mommy and getting some food in my tummy to give Daddy a break since he stayed up with me last night.

Here is a video Mommy took of me sleeping with my Polar bear Nana Shea got me for Christmas. And, yes, that is snoring you will hear....

2 comments:

AnonymousJanuary 8, 2012 at 11:45 AM
Baby Tessa, our prayers are for you to be comfortable every second of your life-our friends at St. Denis Church are also praying for your comfort, too.
Our love to you, prayers for Mom and Dad's continued strength- Aunt Nancy and Uncle Frank
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AnonymousJanuary 8, 2012 at 1:15 PM
Praying for you Tessa.
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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.