Tessa Reed Shea's Documentary: April 1st 2011

Friday, April 8, 2011

April 1st 2011 - Children's Hospital Stay #3

It seemed to Mommy and Daddy that I was having trouble eating the last week in March. They thought maybe my NG (nasal feeding tube) was causing me pain. We had an appointment to get a G-Tube (feeding tube in my tummy) endoscopy and MRI April 2, 2011 and we were trying to wait, but it seemed to them that I was just in too much pain to wait. So early on the morning of April 1, 2011, Daddy and I arrived at the emergency room of Children's Hospital.

The doctors were worried about my high heart rate and admitted me to the NICU. To see if I was in pain, the doctors gave me some morphine. When that didn't calm me down, they hooked me up to my 5th EEG and realized I was having lots of seizures and very unorganized brain activity. After my 2nd MRI, they diagnosed me with Ohtahara Sydrome. Mommy and Daddy were both very sad. As they have told my big brother Brody, I have a very bad brain injury that is causing me to have these seizures and lots of other problems.

Mommy and Daddy have decided to bring me home. I can't wait to get out of this hospital and spend as much time as possible with my Mommy, Daddy, big brother Brody and kitty cat Finnegan.

To keep everyone who loves me up to date, Mommy has decided to document every day of the rest of my life with this blog....

3 comments:

UnknownApril 9, 2011 at 12:02 PM
So glad you are home Tessa! Sending you lots of love. Xoxoxo
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UnknownApril 10, 2011 at 6:03 PM
Jen, I think it is wonderful what you are doing! Tessa is very lucky to have all of you who love her so much! she is a beautiful angel. love you all.
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AnonymousApril 13, 2011 at 8:33 AM
Mommy, Daddy, Brody, Finnegan and Miss Tessa we are thinking about you and glad Tessa that you are home with your family. Love to all of you and we look forward to seeing you. Love, Ralph and Julie
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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.