So about a month and a half ago we did an at home "sleep study" which was just with a pulse ox to measure her SAT's. The results from this made her E.N.T. want a more in depth sleep study and for her to be put on oxygen at night. We finally got the study done last night. She did really well getting hooked up with all of the wires and stuff, there were around 26 of them!!! Once she got hooked up she fell asleep rather quickly and surprisingly she stayed asleep. She did have one of her episodes (crying out) last night, which was good because then they could tell us exactly what was going on. We went over the results with the pulmonologist this morning and didn't quite get the news we hoped for, but in the back of our minds knew it was coming. We found out that she has severe obstructive hypopnea. Obstructive hypopnea is a partial blockage of the upper airway. Which with her narrow airway makes it really hard for her to breath while sleeping. She is working really hard all night long to get the air that she needs. She had central apnea once (completely stopped breathing) last night and that lasted 13 seconds, which the doctor wasn't worried about that. Her REM and deep sleep are normal which was good to hear. Her REM was just shorter periods than they would like. She will be starting a CPAP machine when we can find an at home health care place that will get us one for a child under 66 lbs.....seems to be harder than you would think here in Wyoming. Hopefully we can get it all worked out tomorrow or by the beginning of next week. So a lot to digest but once we can work it into our routine and get her used to it, it will all be good and she will get a full nights sleep for the first time in who knows how long! Just one more hurdle to get over but she can handle it and will rock it like usual!
Braylee and her sister Charlee received their capes from tinysuperheroes. They love them!! Braylee loves to wear hers around and put her arms back and fluff it out. She wore it around the doctors office today and got so many compliments on it! Tinysuperheroes seeks to empower Extraordinary kids who exemplify strength and determination by overcoming illness and disability. Their website is www.tinysuperheroes.com you can sponsor a tiny super hero or buy one for a superhero you know.
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| Getting all hooked up. |
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| All hooked up |
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| Super Braylee Rae and her sidekick Charlee Mae |
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| HI!! |
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| Such a pretty little girl :) |
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| waiting for her results |
