Tessa Reed Shea's Documentary: Ups and Downs

Thursday, September 8, 2011

Ups and Downs

I had a relatively quiet night with my nurse Paula compared to the last few nights. I got a few saline nebulizer treatments to help keep me clear and was able to couch out some mucus on my own. I only needed morphine for my breathing once during the night and one dose of motrin took care of my fever.

My nurse Tiffany was back again this morning and it was a much calmer morning compared to yesterday. We started up my new humidifier to help keep things moist since the oxygen has a tendency to dry me out. We've been really careful about increasing my feedings back up slowly, so today I took in about 560 mls as opposed to half that on Tuesday and very little on Monday. Things seem to be moving in the right direction! Speaking of moving in the right direction, I even pooped today which is the first time in about 5 days!! I have also opened my eyes much more today compared to yesterday where I don't think Mommy and Daddy saw my eyes once:)

I still ran a little temperature today and my oxygen levels have been up and down. This evening, my heart rate was dropping really low and I have been having more seizure activity which is typically of this time of night.

When I did wake up this evening, I noticed someone took my Oinky and replaced it with Mr. Bananas. While he is soft and cuddly, I miss my Oinky. I asked Brody but he said he didn't do it...not sure I believe him.

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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.