Our daughter Kristen (Almost 8 years old) is ventilator dependent and has
NEVER had a trach! At night she is ventilated with a Port-a-Lung/NEV 100
Negative Pressure System. During the day (even at school) she is
ventilated with the Hayek Oscillator by Breasy Medical (which also has a
secretion management mode). Both systems work quite effectively and have
eliminated the need for a trach. Kristen has Congenital Central
Hypoventilation Syndrome and both ventilators maintain her O2 sats between
98-100% and CO2 levels 36-42. Several of the CCHS children in the US that
had been trached are now using the Port-a-Lung or a cuirass and have
successfully been decannulated. Dr. Thomas Rice at Children's Hospital of
Wisconsin (414-266-3360) has a wealth of experience with noninvasive
ventilatory support systems in Pediatrics.
Joanne Kocourek
The University of Chicago
jskocour(AT)midway.uchicago.edu