Tessa Reed Shea's Documentary: I hate nights

Sunday, November 6, 2011

I hate nights

It was another brutal night last night. I was up from 6 til about midnight and it was really non-stop seizures, suctioning, spit-up and LOTS of medicine to try and help me. Nothing seemed to help me and by about 12:30 I finally was so tired and my midnight phenobarbital helped to get me to sleep!

I got a new bath seat since the plastic tub was getting too small for me. I don't lift my head so my new seat is really comfy and lets me take a bath lying on my side which I love. Bath time is much nicer in my new seat!

Daddy and I had a sleepy day today. He was recovering from a late night out and I was recovering from a late night up! Thank gosh we got an extra hour in today to catch up on our zzzzz's.

As Mommy and I are writing this, I am up an at em' again. It is not going to be a fun night tonight. Daddy has round 1 of the night and Mommy will take over around 1:30am. My new nurse Heather starts this week and she will be taking care of me on Wednesday and Sunday nights. Mommy and Daddy are not nearly as cranky when they have had a full night sleep so we all can't wait for Heather to start this week!

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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.