Tessa Reed Shea's Documentary: Bath by Brody

Sunday, March 4, 2012

Bath by Brody

I had a pretty good night with Mommy on Friday night only giving her trouble when I decided to poop twice at 4 am:-) I even stayed in bed and slept all of Saturday morning and didn't get up until the afternoon when Daddy gave me a bath. My oxygen level was high and my heart rate was nice and low.

Daddy watched me on Saturday night and I was pretty good except for the 11pm and 5am poop! I went through 3 pairs of pj's which kept Daddy very busy! Today started out like Saturday with me sleeping a lot, but my heart rate was high all morning. The sun was shining in on me so Finnegan decided to take a nice nap with me.

Then this afternoon I woke up so Mommy decided to give me a bath and Brody even decided to help wash me too!

The bath helped me get some congestion up which seemed to go on for hours. From about 3:30 to 5pm I coughed up congestion and Mommy helped suction it out. When I finally started to relax she put me in my new chair and hooked me up to my pulse-ox to check my stats and my heart rate was high and my oxygen was in the low 80s and upper 70's which isn't good considering I was on 6 liters of oxygen.

She turned up my oxygen and that didn't help at all. Daddy came in to try and help but not position change or suctioning seemed to get me oxygen up. Finally Mommy turned on the shower and we sat for 20 minutes in a very steamy bathroom. Once they hooked me back up my oxygen was a little better so Mommy decided to hold me and my oxygen slowly went up to a safer level.

I am resting in my crib now and still on a high concentration of oxygen. I am pretty worn out from that episode so hopefully I get a chance to rest tonight.

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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.