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 Part 2

We got Kara in the crib and started moving wires and getting her situated. We thought we had her all set up but she started stirring, saw me and panicked. She stood up, crying and I held her and snuggled her. I finally asked if she would lay back down in the crib and I would pat her butt. She did this, rolled over, snuggled in and we stood over her, rubbing her back, patting her butt, consoling her. We'd stop, thinking she was alseep and she's say "Mama?" The nurse said we needed to do this until she went into slow wave, deep sleep and then we'd try and get out of there. It seemed to take forever, but basically we both were in a pitch black room standing over a crib staying as silent as possible except for the pats on her bottom.

The nurse finally came in and we quietly tried to pack things up. At one point, Brian bumped a toy. "Shhhh!" I said! They assured me that she was in a really deep sleep and with that, she didn't even budge! They showed us our arrangements for the night and made us right at home. They treated us so well! Brian and I had a room in a consult room - it had a small couch in it and a pullout chair, all ready to go for us. The nurse said we could knock on their office door anytime in the night to check on her and assured me they'd come get us if they needed us. Since Kara was the only patient that night they even let us in their office and showed us what was going on. Holy cow, 22 leads gives a LOT of info. They had a camera focused right on Kara as well. Pretty cool! I'm glad we got that opportunity!

Brian and I got settled in and I was exhausted. By this point it was almost ten. I had no clue how our night was going to go so I wanted to get to sleep. It had felt like I had slept the entire night when there was a knock at the door. She nurse said she had just woken up so they were trying to get her back to sleep but she was crying for Mom. They said they got plenty of information so if I wanted to come snuggle her, maybe we could get her back to sleep. It was only 3:45!

I got to the room and she was sitting up as they were working on un-hooking her. She was SOOO happy to see me! They said she did so good. She started stirring a little bit and they could see her eyes open and close. Then she seemed to notice that damn oximeter again and that was enough. She was kicking at it, doing anything she could to try and get it off. Funny how with all the wires on her, that again was the only thing that bothered her! We turned her movie on again and snuggled while they worked with adhesive remover and wet wash clothes trying to get her cleaned up. We got her a bottle and again, she refused it, just wanted to hold it. Funny girl. They let us be and I sat with her trying to get her to go back to sleep but she was wired. She started asking for Daddy so I told her to knock on the door and tell the nurses we were going bye-bye. That bought us some more time before waking Brian up - someone had to get some sleep to drive home! They got such a kick out her her. She gave them all hugs and kisses and certainly didn't hold a grudge from the night before! The nurses couldn't give me much info about the study, just let me know that the doctor would be calling me today with the results.

We went to our room and she was so happy to see Daddy! Brian asked about the time and with that we promptly got up and ready to go to beat the morning traffic. We were on the road by 5:00 and home a little after 7:00! Kara did really well, I'm so proud of her. This is working her up for next weeks surgery, that's for sure!

We bummed around today and I had many attempts to get Kara to go to sleep - I was so tired. Any change in my sleep seems to mess me up for days! The doctor called mid-morning. He said Kara had mild to moderate sleep apnea, occurring about six times an hour. He let me know that he is sending the report to the ENT so we will hopefully find out before the weekend if the plan is to take the tonsils out as well or not. If we dont' find out by Friday, Kara's preop with him is on Monday. Surgery is Friday!

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