Tessa Reed Shea's Documentary: Still Quarantined

Tuesday, August 9, 2011

Still Quarantined

Well, my brother was still really sick still today so Mommy, Brody, Nana and Pop-Pop spent the day home with me again but we kept Brody in the opposite part of the house. My night nurse Paula took care of me last night and I gave her a little trouble because my heart rate was really low all night and to top it of, my pulse-ox probe was malfunctioning. I also was unresponsive when she would pick me up and move me around. Paula went to get Mommy in the morning to let her know she was worried about me. We checked my heart rate manually and kept my oxygen on until the new pulse-ox probe was delivered. Nana stayed with me in the morning so Mommy and Daddy could get a few extra hours sleep.

My day nurse Joy came and was also a little concerned that I wasn't waking up when moved, so we called my Hospice Nurse Lynda who stopped by early to check on me. She said my heart rate sounded good and my increased dose of Valium had probably just caught up to me. She was right because a few hours later I woke up and was my normal self:) My new pulse-ox came and all my stats were doing just fine so we took me off my oxygen and I have been off all afternoon. The past week I have been having many more outward seizures and we are keeping a close eye on that.

Nana got me ready for bed this evening and I am now resting on Daddy before I go in my bassinet. It's Mommy's turn to watch me tonight and I can't wait to snuggle with her!

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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.