Tessa Reed Shea's Documentary: Fighter

Monday, September 5, 2011

Fighter

It has been a very rough few days for me. Yesterday started out ok, but after my first feeding, we started to notice something was very different. Mommy decided to run to the store quickly with Brody to pick up a few things and Daddy gave her a call to come home quick. My breathing became very labored, known as stridor and I was still running a high fever and needing oxygen.

Daddy gave me a dose of morphine to help the stridor and a large dose of hyocyamine to help with my secretions which needed to be suctioned every 10 minutes or so. Mommy and Brody then got home and a few minutes later the Hospice nurse arrived. Snuggling with Daddy made me feel better but I still sounded awful like I was breathing in fluid. The nurse said it sounds like I have lots of fluid in my lungs which means that I probably have pneumonia. That made Mommy and Daddy very sad.

After another dose of morphine, we told the nurse she could leave because I started to sound a little better and had fallen asleep. That was short lived and an hour or so later I woke up again with my the same strider and it seemed liked no drug was helping me. Mommy and Daddy thought they might have to say goodbye to me at any moment. Brody got to go spend the night at his friend Ajax's house so Mommy and Daddy could concentrate on taking care of me.

Another Hospice nurse came over to check on me and we tried a few things to help alleviate the stridor. She did tell Mommy and Daddy that they have lots of older patients with pneumonia who are on morphine and breathing just like me who can tell the nurses that they are not in any pain. That made Mommy and Daddy feel better to know that even though my breathing sounds awful, that I am not in any pain.

I had lots of ups and downs last night, but overall I am still holding my oxygen levels (with help from my oxygen concentrator) and my heart rate is ok with some spikes and dips here and there. It was a very long night and none of us slept much at all. My nurse Joy is here today and is going to stay late to help and another nurse is coming tonight.

1 comment:

AnonymousSeptember 5, 2011 at 5:24 PM
Thinking of you all. Sending love.. bryan & antoinette
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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.