Tessa Reed Shea's Documentary: Workout

Friday, February 10, 2012

Workout

I had another difficult night with my nurse Beth. We tried albuterol treatments and lots of medications but nothing seemed to help my high heart rate and respiratory distress. My oxygen was low this morning and we had a hard time keeping it up but I started to bring it up on my own just as Daddy was getting in the shower.

It was a typical busy Friday with my nurse Ines today! My hospice nurse Carol stopped by to check on me and we got all our supplies and medications ordered. She is still amazed at how well I recovered from the pneumonia! I have been pretty sleepy the past few weeks with some difficult awake moments but we don't see an immediate need to increase any medications.

My therapists Neala and Siobhan stopped by this afternoon and gave me a great workout. We are working on ranges of motion that a typical 1 year old would be doing but that I am not able to do on my own. Needless to say, my limbs were moving all over the place and it felt great. We tried to do some exercises on my back but that just didn't sit well with me so we stopped.

I was wiped out when Mommy got home and she saw my heart rate lower than she had seen it in weeks so we all knew I was in a deep sleep! I am starting to wake up now and my heart rate is going up. My night nurse Heather is here tonight so we can all get a good night sleep.

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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.