Kara was diagnosed with food protein induced enterocolitis syndrome (FPIES) in August of 2010. She has had many FPIES reactions and complications that have lead to numerous hospitalizations and specialist appointments. It was a huge sigh of relief to finally have some answers and a diagnosis, however we have to remind ourselves daily that this is a very serious disease and this is only the beginning of the long road we have in front of us.

Wednesday, June 1, 2011

Sleep Study Set-up

Last night was the long-awaited sleep study. On our way down to Gillette Children's Specialty Hospital I received a call that they had a cancellation so we could come earlier than our 8:30 arrival time. We stopped and had a quick drive-thru dinner and luckily I had packed a dinner for Kara. Kara was pretty excited. We told her she's going to the doctor and we played games about how she's going to sleep there in the doctors crib. She thought that was pretty neat and exciting! We got checked in and they took us back right away. We walked into the room and she was so excited to see the crib, she wanted to lay down on it right away. We brought her new lady bug Pillow Pet - her fave, since they wanted us to bring special things from home. She laid down on it and we teased "nigh-night!" to which she promptly got back up!

Kara picked out a Dora movie and with that, sat on my lap. We had three nurses working with us and one of them came back with a big blue fleece tie blanket with Dora on it! She was SO excited to get a new blankie! The volunteers make them for the kids to keep! We visited, and Kara charmed the nurses as they started setting things up. They first measured spots on her head and marked them with a special red pencil. She thought that was pretty silly that they were writing on her - I hope she doesn't think this is ok to do! :) They started hooking her up quickly and she tolerated this for a little while, snacking on her grapes. First they clean the area, then apply some adhesive, then push pretty hard to stick the lead to her head, then cover it with a piece of gauze.


She tolerated the beginning part just fine but she had 22 of them on her head. As they started on the sides and the other nurse started putting them on her legs and chest, she started getting really agitated. It was heartbreaking having her cry so hard. I held her down, Brian held her hand and we tried so hard to console her. I stayed in my Super-Mom Mode, trying to be strong, telling myself that nothing hurts, it's just really scary, but she doesn't understand any of this - she probably wonders often why we do what we do to her!!!



The dreaded pulse oximeter on the toe was the last thing that set her off. She had major problems with this during her scope too - I figured it was because of the painful swelling that she had in her feet. She had a fit and I dont' see how she could remember the scope - she was only 17 months at the time but she sure wasn't happy about it! After that came the most important piece. They wanted to try the piece that goes under her nose. If this sticky white thing with leads on it wasn't going to work they were going to have to put one on that actually goes IN her nose. She had a really hard time with it but by this point, she was hooked up to so many different tubes and wires that there was really no reasoning. We kept trying her bottle hoping that would settle her down and help her fall asleep. She wanted it close but wouldn't touch it!


The final step was to put a wrap over her head to hold all the wires together so she didn't get tangled up in them. It was so sad to see her look like this. I'm having a hard time wondering if we are doing the right thing. Should we just put off the tonsils, what should we do? What is the right thing? It's all out of my control right now and I HATE THAT.


We snuggled into the chair and finished watching Dora. Once Kara was asleep in my arms, we got her up on the crib. Here was hoping for a good night!




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