I recently contacted the ventilator clinic to inform them of Avery's recent tests and to get them on the same page as far as weaning Avery off the vent. Which is what her ENT wants to do. During the conversation her sleep study was brought up. I pointed out that her results have not been explained to me. I have been told she no longer has central apnea but now has obstructive. Okay, where on this paper does it say that. As she started explaining to me the different categories and what they meant, she says "Avery's trach was open during the sleep study". I paused and said, "no she was capped for 5 hours and gasped to breath and was then put on her ventilator the rest of the night." I could hear some confusion in her voice. She said this changes everything. Another sleep study is going to need to be done. This sleep was documented wrong which then gave wrong results. No wonder everyone has been giving me a hard time about decannulating. I know at home she breathes fine without her vent when she sleeps, so I couldn't understand what the problem was, now I know. Glad I kept pushing. This sleep study would have been the deciding factor for Avery's trach.
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