Tessa Reed Shea's Documentary: Improvement Day

Friday, July 29, 2011

Improvement Day

For some reason Friday seems to be my most difficult day of the week. Last night I couldn't keep up my O2 saturation so I had to go back on oxygen:-( Mommy tried to take it off a few times and my stats just kept dropping. I also started developing a fever which meant that my heart rate started increasing too. By the time my nurse came this morning my fever and heart rate were pretty high so we decided to give me some tylenol which slowly helped.

I thought it was going to be another tough Friday for me but I was able to get off oxygen before noon and was very calm and relaxed the rest of day! My nurse Ines was happy since I usually give her a tough time on Friday. Lynda, the Hospice nurse stopped by to check on me and make sure all the medication dosages are working. The increase in Valium is making a big difference and I am much more relaxed with less outward seizure activity.

Mommy, Daddy and Brody got home and we had our second night of yummy enchiladas that the Versaw's made for us this week. Then we all enjoyed a nice walk outside while Brody practiced riding his bike.

I am getting so long that my outfit that Susan just bought me is getting too tight:( I am still really skinny since I have trouble eating when I'm having seizures and am just under 13 lbs. The nurse gave Mommy some good recipes for making a high calorie formula to add to my "Mommy Milk" that we may try 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.