Tessa Reed Shea's Documentary: A good thing never lasts

Friday, November 18, 2011

A good thing never lasts

I was having such a good week and then we got some bad news today. Turns out I was taking too much hyocyamine. We confused my dosage and have to cut back on how much I am taking even though I was doing so well on the increased dose:-( This is a true bummer since today was my first pretty bad day in almost a week. The hyocyamine has really been helping keep me calm so today I didn't get to sleep as much and was having lots of seizures and needed lots of suctioning.

We will talk to the doctor tomorrow to see if there is another medication we can try instead of my hyocyamine which doesn't seem to be working at the maximum dose I am allowed to have.

Happy Birthday to me today!! I am 10 months old and growing. I weighed just over 15lbs today which is a pretty good increase from the last time I was weighed. After everyone sang happy birthday to me I got to taste a little icing from my cupcake!

Once Mommy put the icing in my mouth I started to drool a little bit so I guess I liked it. I haven't had anything besides my suction catheter in my mouth in a few months so it was different. Then everyone else enjoyed the cupcakes including Finnegan the cat! He was begging for some cupcake so Mommy gave him a little taste of icing too.

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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.