Tessa Reed Shea's Documentary: Swollen

Monday, January 23, 2012

Swollen

Things have become much harder for me over the past few days. I wasn't able to open up my eyes all day today because I am so exhausted. I had a difficult time this morning keeping my heart rate down and my oxygen up and I was struggling to breathe. A new thing we noticed this morning is my hands, feet and face were very swollen this morning.

While no one can tell us for sure what is going on I appear to be getting sicker. We spoke for a while with Dr. Gien tonight and he thinks maybe my heart is working harder to keep oxygen in my lungs so it is affecting the rest of my body functions. It is hard to tell exactly what is going on without going in for tests. Daddy will talk to the Dr. again tomorrow morning to let him know how my night goes.

Mommy didn't get a picture of me today which is fine by me because I felt like the paparazzi was here the past week.

No comments:

Post a 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.