Discouraging Post-Tonsillectomy Sleep Study Results

Annie's pulmonologist called me today with the results of her sleep study from last Monday night. Not good news. It looks like the tonsilloadenoidectomy did nothing to improve Annie's sleep apnea. She is still having 13 episodes of apnea each hour with oxygen sats dropping into the 70s. We're very discouraged and feel terrible for putting her through a surgery that had no benefit. Annie's snoring has improved--we no longer hear her snoring from the other room, but she's not breathing any better than before.

The pulmonologist called us with his report before our consultation appointment because of Annie's surgery tomorrow. The anesthesiologist needs to know that she is still a high-risk case. She has surprisingly always tolerated anesthesia very well however. Then next week we will go meet with the pulmonologist to discuss where we go from here. There are really only 3 options:

1) do nothing to treat her apnea and live with the side effects of poor sleep and eventual heart failure,
2) put Annie on CPAP which can be difficult to keep on a child, especially since Annie vomits regulary at night and sucks on a binky, or
3) give Annie a tracheotomy which would completely alter her quality of life and level of care required. Annie would lose her sweet voice making communication much more difficult also. A trach is something we've always decided against, so we are not considering that as an option.

At this point I think we're willing to try CPAP and if Annie tolerates it and her quality of sleep improves we'll consider it a success. We owe it to Annie to at least try such a non-invasive treatment, but we also realize that if she doesn't tolerate it, we feel comfortable stopping the CPAP and stopping treatment for her sleep apnea. That's the scariest option because we'll always be wondering if tonight is the night she'll stop breathing altogether. We also know that she will eventually develop heart failure if she continues to have apnea that's not treated, so we're just hoping that CPAP might be an easy adjustment for her and us as well. At this point, what difference does one more machine in her bedroom make? So please continue to keep Annie in your prayers--that she will be able to respond well to CPAP, and if not, that she can at least be kept as comfortable and happy as possible.