Name and age of cDECANNULATION UPDATES: So many!!

[Michael's mom]

With so many of the children being decannulated lately and during the summer, I thought it might be good to post a brief summary of your child's background. For those of us who are a year or two away (God willing), it gives us great hope and let's us get a realistic feeling for where we are in the cycle - how far we might be from being decannulated. Please post the following:
Name and age of child:
Diagnosis related to trach:
Other Diagnosis/Disease:
How long has child been off the vent:
Hours child wears Passey-Muir valve a day:
When child will be decannulated:
Suggestions or sentimental notes for success:
Thanks to anyone who posts! It's so exciting to read yours. Sue,
Name and age of child: Michael, 1 yo
Diagnosis related to trach: tracheomalacia
Other Diagnosis/Disease: hypotonia
How long has child been off the vent: 4 months during day only
Hours child wears Passey-Muir valve a day: 3
When child will be decannulated: 1 year or so from now
Suggestions or sentimental notes for success: PUSH! The doctors won't!!

[cariaad]

I hope I can remember all that!
Name and Age: Allison (Alli) Kelsey 20 months old

Dx related to trach: subglottic stenosis caused from self extubations while in NICU

Trached at 4 months old, 4 lbs 3 oz on Dec 28, 2000

Other dx: 24 week preemie, severe I.U.G.R., BPD. Asthma, ROP (both eyes, corrected with laser surgery), Developmental delays related to prematurity

Alli wore the PMV off and on all day except while sleeping. She would sometimes want it off so we obliged as she could also make some good sounds around her trach without it

Decanulated: Monday, May 13, 2002!!!! Still doing well at day 5!!!

[cariaad]

P.S. Alli only needed the vent to actually breathe for her for approx. her first 3 months. The settings were always quite low. She did need O2 support. She just couldnt maintain an airway and they wouldnt consider a trach until she reached 4 lbs.

My best recommendation is treat your trached child as normally as possible, be greatful for the trach not resentful (which is hard sometimes when you are getting by on 2 hours of sleep and see your friends kids out playing) Speak up at your specialists' visits-You know your child best!

Deb

[Olga]

Grace 22 months
Trached due to subglottic haemangioma
No other relevent medical problems - eats normally, developing normally.
Never needed a vent
Doesn't need a PMV, just puts her chin down over her trach to make a noise
No idea about decannulation. Our doctor doesn't give us false hopes.
I know that one day Grace will be decannulated

Name and age of child: Evan is 2 yrs, 3 mos.

Diagnosis related to trach: Subglottic Stenosis due to intubation.

Other diagnosis: He was a 32-week preemie, and has had some developmental delays. Thanks to a lot of therapies, he is now almost all caught up.

How long has child been off the vent: Since he was one week old!

Hours child wears Passey-Muir valve a day: He would never tolerate the PMV. He now wears a cap most of the time.

When child will be decannulated: June 11. 2002 (God willing&#33

Suggestions or sentimental notes for success: The most important lesson I have learned is that no one looks out for my child's interest better than I do. I have learned to follow my own instincts. Never stop pushing doctors, nurses and therapists to give your child the best care possible.