Once weaning began, how will it take?

[Michael's mom]

I am curious as to how long this weaning and decannulation process takes...I was hoping/assuming it would be no more than 6 months. Please inform me of your situation or what you expect. Weaning means from the time you began going without CPAP/BiPAP/vent - wearing only a nose. Thanks! Sue

[twintotwin]

From the time we weaned off the vent and switched to the nose, it has been 13 months for us. Decann may happen come this spring. Most likely.
The boys were on the vent for their first 2 years of life.

[Rachel0806]

Sue,

You have so many choice and none of them are what we experienced. Â*It is so different of every child.

Claire was off the vent all day long in about 4 weeks and then we did a sleep study to see if she could come off nights. Â*After the sleep study, her pulm just said no more vent with no wean at night. Â*

As far as decann, Â*we are looking at 5 or 6 years but Claire is different. Â*She has no airway above her trach. Â*It is swollen with a soft tumor and she has to grow faster than the tumor and get many lasering treatments.

Rachel

[CamdonsMom]

It seemed like Camdon was on the vent forever...then we went to cpap. We weaned from cpap to nothing with in 2 weeks. Then went without just trached for 3 months and then decanned. When they decanned--that was alot faster then I expected. They did a bronch then capped (24 hrs) then decanned (observed for 24 hrs) then went home.

Tanya

[Kara Beth's Mommy]

Kara weaned in the day time in 3 weeks and stayed there until we had her next pulmo appt 2 weeks later. She was taken off from the vent then and we have a sleep study for next Friday. We are looking for decan in the Spring.
Rachel

[TeraNicole]

Zachary has been on the vent for over 2 years and we have not begun to wean. May not ever be able to as his diaphragms are paralyzed. We're trying though!!!