Tessa Reed Shea's Documentary: You give me...Fever

Friday, September 2, 2011

You give me...Fever

I slept pretty good after my big spit up last night but Daddy did have to put me on oxygen because I just couldn't keep my oxygen up after multiple times trying to suction me. I woke up this morning with a fever, but some Tylenol did the trick and it went away.

It was a busy day in the house this morning. After my bath, my hospice Nurse Lynda stopped by to check on me and get me weighed. I was 6.06kg (13.3lbs) which means I lost a little weight. We were not surprised since I have had such a hard time keeping food down the past few days. My occupational and physical therapists stopped by today for a visit too. They helped us work on positions for me in my new Z-flo positioners to keep me from getting sore or stiff.

I finally got to rest after all the excitement and took a great nap for my nurse Ines! Mommy was even able to sneak in a nice nap. I took most of my last feeding (-20mls) which was great, but I woke up around 7:30 with a high fever of 102 and a very high heart rate.....I just got some more Tylenol and some snuggle time with Mommy and Daddy.

I am feeling a little better now and my heart rate is slowly going back down. I got a surprise Skype call from Nana Reed and her friend Marie which was fun. I was pretty sleepy so I couldn't open my eyes, but I always love to hear my Nana's voice...

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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.