Wednesday, August 5, 2009

The Results (Sort Of)

We finally got the call for the doctor's office about Lizzie's sleep study results. The doctor has cancelled her decanulation (trach removal) procedure set for next month. We are all very bummed because we want the trach gone for so many reasons, but on the other hand, we understand that Lizzie needs to be safe while she is sleeping. They found that when she sleeps with her trach capped off, there is some obstructive apnea occurring. This is where the "sort of" part comes into play. Obstructive apnea can have several source, like enlarged adnoids or tonsils, or the tongue falling back too far in the mouth to block the air passage. The source of her obstruction is unknown at this point. It may be related to her partial vocal chord parallesis. It will take more time and tests and procedures to determine exactly what is happening there. And, the main point is that the doctor did not feel that she was safe enough to remove her trach.

I spoke only to the nurse whose job it was to report their findings and conclusions to me and had very few answers to all of my questions. They set us up with an appointment on the 18th of August to see the doctor, and I plan to come ready to ask a lot of questions. My fear is that the appointment to remove Lizzie's trach was cancelled pre-maturely. I sure hope the doctor did not forget that Lizzie already sleeps with bi-pap at night which can be a solution for obstructive sleep apnea. I guess we will find out soon enough.

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