Tessa Reed Shea's Documentary: 1st Day of Nursing!

Friday, June 10, 2011

1st Day of Nursing!

My new nurse Ines was here today. It was a very busy morning for her 1st day. First Mommy and Daddy showed her around and then Mommy left for work. Then the Hospice nurse came by and then the cleaning lady and the lawn folks showed up (thank you Rubinstein's & Simon's for the lawn service!).

Daddy and Pop-Pop got to go out for lunch while I got to know Ines and then the Director of nursing for PPHC came by to drop off my patient home chart and talk with us and Ines. Then Mommy got home and shortly afterwards my brother came home and we had the Freedman's over for dinner. It went from quiet to crazy but was lots of fun. We all sat outside and Daddy grilled some burgers while my brother and his friend Ajax ran around the backyard. Mommy fed me dinner and then Daddy held me.

I didn't hold my dinner down and ended up spitting up most of it. I am having lots of seizures now and I don't know if I will be able to hold down another feeding tonight. Hopefully the seizures calm down soon so I can get some rest tonight.

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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.