Tessa Reed Shea's Documentary: Ups and Downs

Friday, March 2, 2012

Ups and Downs

I've been riding a vitals roller coaster the last few days. On Wednesday night I had a pretty scary episode with my nurse Heather. After my midnight dose of phenobarbital, my oxygen plummeted really low and my respirations (breaths per minute) were in the low teens and my heart rate was very hight. I went really limp and no position change seemed to bring me back to a safe zone. Daddy even got up to see if he could help and the only thing that seemed to help was time.

We think it may have been because of a high level of phenobarbital in my system since we gave me some extra doses to help with the bad seizures I was having 24-hours beforehand. My extra doses of morphine and valium are helping to keep me calm and keep the spastic seizures to a minimum. My heart rate goes up and then goes back down all day along with my oxygen. I still haven't been able to be on less than 2 liters of O2 and sometimes I can be on as high as 8 liters depending on what is going on.

Mommy and Daddy are on their own this weekend since we don't have the help of my wonderful nurses. It is hard for both of them but it lets everyone get some good one-on-one time to spend with me. Mommy is on Friday night duty with me and I am going to try my hardest to let her get a few hours of sleep, otherwise she can be a real grouch:-)

1 comment:

CarynMarch 3, 2012 at 2:59 AM
Thinking about you this weekend and hope that you're hangin' tough (as the New Kids on the Block would say :) )
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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.