Tessa Reed Shea's Documentary: Breaking the Law

Thursday, October 13, 2011

Breaking the Law

Yup, you got it, Mommy and I broke the law today. I have such a tough time sitting in my car seat. The minute Mommy and my nurse Tiffany put me in my seat today I went from asleep to awake and the seizures started. Daddy got home just in time and said get her out of the torture chair and we will just go to the doctor without the seat. **Warning, if you are an officer of the law, please do not look at the photo below**

So, Daddy drove very carefully while Mommy and I sat in the back of the car. I still didn't care for the ride but I was much more comfortable in Mommy's arms. I even fell asleep on the way there and slept through getting weighed (6.7 kg), my visit with Dr. Gien and the flu shot!

I had to go over to the blood lab and that is when I finally woke up. The nurse at the blood lab put a warm compress on my finger and as soon as she pricked me, I made an awful face. Then she started rubbing my finger to get the blood out which really hurt and my eyes opened and I was very annoyed at the nurse.

Once that was all over, we all hopped back in the car and headed home. Two outings in one week is a record for me. I am exhausted now! The car ride home was pretty awful, but I am resting peacfully now and we are trying to catch up on my feedings since I don't eat before or during my trips out of the house.

Mommy and Daddy are waiting for Dr. Gien to call with the blood results. It will help them decide whether or not we need to stop the phenobarbital or change my dose. If we end up stopping phenobarbital, we will have to take another course of action with the medication. We will see what happens......

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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.