Cheyenne had a sleep study at Primary Children's Hospital. The purpose of this sleep study is to determine why her heart rate keeps dropping below 50 bpm while sleeping. The Cardiologist Dr. Everette indicated that not only is dropping below 50 bpm but also pausing to the point that if Cheyenne didn't have a trach and there was no other variables she would immediately put on a Pace Maker. We are hoping that is not the case, and hoping that is the trach that is causing the irregularities. Cheyenne's heart rate was being affected about a year ago and Dr. Park ENT went in cleaned up scar tissue and obstructions the trach is causing making her heart work harder. This seemed to help temporarily.
While we did this, we also requested they do a capped track study. Cheyenne has been doing great wearing her cap all day except for nap time.
We had mentioned the sleep study to some of our good friends, Rian and Sid Kroemsek, whose daughter Maaike had a trach. They being experts at it warned us about what a sleep study in tells. They warned us about the wires, goop in the hair and how uncomfortable it is. We were certain Cheyenne, would not do very good because she is very picky about who touches her, doing things herself, and definitely does not like things on her head.
She surprised us! She was so good! She let the Respiratory Therapist attach all 27 wires, monitors and even what I called the Teletubby net hat. The wires monitored oxygen levels, heart rate, work of breathing, leg movement and snoring and I'm sure other things.
She did pretty good until they switched the nose cannula to a mouth cannula because she is a mouth breather when she has her trach cap. She was a bit worked up and did not want her trach cap.
We took it off and waited until she fell asleep which was hard because she couldn't drink out of her zippy cup with the cannula straw in her mouth. We tried several times after she fell asleep to put the cap on but she would wake up in a panic. Sadly, we had to make a decision to leave her uncapped and test only for the heart rate since that was the biggest concern. A bit disappointing because we were hoping that if she could handle the cap at night she could get de-cannulated and hopefully solve the heart rate problem.
She woke up every hour and when she realized she was still all hooked up she would cry and I would have to help her fall back asleep all over again. Very rare for her. Cheyenne has always been a good sleeper. From the time we brough her home from the hospital, we can just lay her down in her crib and she would sleep all through the night. To say the least, neither her or I slept very good that night. But either way, we are still hopeful and get to the bottom of her heart rate problems.
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