Are you using a bipap at night with an AVAP setting or a setting less than that? I have several friends who use the puff system of ventilation. They love it and it is far less restrictive than a trach and with no danger of infection..There is a demo on YouTube
Definitely contact Dr. Finder. He has had very good luck with non-invasive forms of ventilation. He spoke at the conference.
Also refer to the American Thoracic Society guidelines for DMD care: http://www.thoracic.org/sections/publications/statements/pages/resp...
This document is somewhere on the PPMD site as well in PDF...
Here's Dr. Bach's website:
Even better, ask your sons' pulmonologist (politely) to get in touch with one of these doctors :-).
Thanks to all for the great information. The sip and puff youtube video was great. What about CO2 levels? That seems to be one of the major concerns of the pulmonologist. Does the sip and puff system take care of clearing the lungs enough of the CO2?