Tessa Reed Shea's Documentary: Low O2

Sunday, January 22, 2012

Low O2

I had a rough night with Daddy last night. We talked to Dr. Gien before bedtime and increased one of my medications and switched my dosing on another. My oxygen was low and my heart rate was high so Daddy had to keep re-positioning me to see if he could get me to cough up some congestion. He gave me all the medications in our bag of tricks.

This morning Mommy and I stayed home while Daddy took Nana Shea to the airport. Thank you for all your help Nana Shea, we will miss you!

I got my NG tube taken out of my tummy and then enjoyed a nice bath with Mommy and didn't cough up as much congestion as I normally do. I was very sleepy and slept through most of my bath and even my exercises. I did decide to wake up pretty calm so Mommy decided to take some video.

It was more of the same this afternoon trying to fight a fever, low oxygen and a high heart rate. I have been able to take a good amount of food today but it is still not as much as I was getting a few weeks ago. My nurse Heather is here now to take care of me tonight. Mommy and Daddy are tired so I hope they get a good night sleep tonight.

1 comment:

AnonymousJanuary 24, 2012 at 10:38 AM
Tessa, you're a beautiful girl and so lucky too that you were sent to live with a such a beautiful family... We want to wish you a very happy belated birthday!! Love and miss you bunches,

Christine, Ken, Abby & Zach ;)
ReplyDelete
Replies

Add comment

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.