Tessa Reed Shea's Documentary: Fun Friday

Friday, June 3, 2011

Fun Friday

I had another busy day today. My nurse came to visit me this morning. My new drug regime of Valium every 6 hours seems to be helping along with the Hyoscyamine sulfate drops when I get too congested or anxious. Ativan just didn't seem to be helping me calm down anymore so I'm not taking that very much. Mommy and Daddy still have to suction me out a lot to keep me from getting too congested but I am still able to sometimes cough up congestion in my throat.

This afternoon another nursing agency stopped by to meet me. I will get to meet two more nurses on Monday and then Mommy and Daddy will decide which nursing company to choose.

I got lots of good snuggle time with Uncle Rich today. He even fed me:)

This evening Daddy's friend Adam came over to visit while Mommy and her friend Robin went out for dinner. It was a fun evening.

1 comment:

John A.June 4, 2011 at 6:54 PM
Great to see you with your Uncle Rich Tessa......miss you!

Love,
Uncle John
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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.