Tessa Reed Shea's Documentary: Steam Bath in the Kitchen!

Saturday, February 11, 2012

Steam Bath in the Kitchen!

Last night I started the night off with a low temperature that I just couldn't kick and some respiratory distress. The fever broke and I fell asleep around midnight. I woke up around 5am with more respiratory distress and that pretty much continued until after my bath around 10am.

Mommy decided to give me a bath in the kitchen sink today since it is such an ordeal to move everything into the tub area. I am also getting hard to hold since I am very limp and even though I'm only 18lbs, it feels like double that when trying to move me around. The sink was a little small, but I still liked it and Mommy left the faucet running (don't tell Denver Water!) in shower mode so I got a little steam action to break up my congestion.

After my bath and exercises I was finally able to cough up a bunch of congestion and settle down for the afternoon. I slept most the afternoon and evening with just a few respiratory distress episodes.

I am finishing up my last feeding of the day now with Mommy. She has first shift tonight and then Daddy will take over. I just had a breathing treatment and all my stats look great so fingers crossed for a sleepy evening!

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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.