Tessa Reed Shea's Documentary: Tiffany to the Rescue

Wednesday, August 31, 2011

Tiffany to the Rescue

I started out pretty rough last night so Mommy picked me up (yay!!!!) and held me for the first part of the night. I was having lots of spasms and when I get into the hook of Mommy's arm I just seem to relax and fall asleep:) Mommy woke up about midnight and I was really relaxed so she decided to put me in my bassinet (booo!!!!!) but I forgot about my new Z-flo positioners (yay!!!!!) and she got me all snugged in and I went right back to sleep. I slept very soundly for the rest of the night and had great stats and didn't need to be suctioned at all...that Mommy could recall anyway.

My nurse Tiffany came today and we did the speed-feeds again today to get all my feedings in before 7pm and it was a huge success. I didn't have any big spit-ups and had good stats all day except for an elevated heart rate this morning. Tiffany stayed late with me tonight so Mommy, Daddy and Brody could go out to get a bite to eat. They haven't been able to do that during the week in a very long time! I wish I could have gone, but I was happy as a lark in my Z-flo enjoying the peace an quiet with Tiffany before my crazy brother came home!

After Tiffany left, I was sitting with Daddy and my heart rate started to increase and my oxygen level started to drop. I was making lots of noises which I rarely do and was trying to cough out some mucus. It took me about 10 minutes and gave Mommy and Daddy a good scare, but I was finally able to get it out with the help of the suction machine and I am now resting comfortably. My nurse Paula is coming tonight to watch me so Mommy and Daddy can get at least one good night of sleep this week. We are still looking for another nurse to watch me a few more nights but so far no luck!

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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.