Tessa Reed Shea's Documentary: Holding On

Sunday, December 18, 2011

Holding On

We have been trying to incorporate the new medicine into my med-routine and while it seems to be helping, we don't think it is working to its full potential. I am still having the increased seizue activity and respiratory distress. The Versed is helping to keep my heart rate down during these episodes but for at lease a little bit, but after it wears off, I am right back where I started.

So we just got off the phone with Dr. Gien again and discussed the medication situation and came up with another dosage change. He didn't think our last increase was significant enough so we are going up on valium and versed again. Let's hope tonight is better than the last few nights. I am holding on tight and ready to get some relief from these nasty seizures.

P.S. I am 11 months old today! I have amazed everyone by fighting through some very difficult times. Mommy and Daddy thought they had lost me a few times, but I am a strong girl and have fought for every second of my life. Happy birthday to me:-)

1 comment:

AnonymousDecember 19, 2011 at 6:21 AM
Tessa, Happy 11th-Mom and Dad have been given a gift that has enlarged their lives and love-and that gift is you!You ARE a special little girl. We will say a special prayer for your birthday today. Love, Aunt Nancy and Uncle Frank
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.