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jamie.petrone@yale.edu
03-09-2012, 11:46 AM
My son Noah is a former 25 week twin who has been trached since 4 months due to multiple failed extubations. He has been off the vent for 2 months and is doing great. He is not on any O2 and only has required O2 when sick with a bad cold or trach infection. He has a bronch scheduled for this Tuesday w\ possible decanulation pending the results. He has stenosis and malacia. He is currently tolerating the Passy muir valve most of the day w\ no problems. He does require a lot of suctioning (and alwasys has) but is able to cough up at times. I'm nervous about Tuesday's possible decan, but sooooo ready. My only concern is that when they covered his trach at his last doctors appt with their finger to plug for a few minutes- he did fine, but was restless. I'm sure he didnt like it. Any one have experience w\ the capping process as part of decanulation? I'm so nervous about the first night (if the bronch is well) because I cant imagine him being capped for so long and will he be suffering?
Thoughts\advice\experience are all appreciated!!!!

mylesmom
03-09-2012, 06:56 PM
My son Noah is a former 25 week twin who has been trached since 4 months due to multiple failed extubations. He has been off the vent for 2 months and is doing great. He is not on any O2 and only has required O2 when sick with a bad cold or trach infection. He has a bronch scheduled for this Tuesday w\ possible decanulation pending the results. He has stenosis and malacia. He is currently tolerating the Passy muir valve most of the day w\ no problems. He does require a lot of suctioning (and alwasys has) but is able to cough up at times. I'm nervous about Tuesday's possible decan, but sooooo ready. My only concern is that when they covered his trach at his last doctors appt with their finger to plug for a few minutes- he did fine, but was restless. I'm sure he didnt like it. Any one have experience w\ the capping process as part of decanulation? I'm so nervous about the first night (if the bronch is well) because I cant imagine him being capped for so long and will he be suffering?
Thoughts\advice\experience are all appreciated!!!!

Our son went through a capping trial before he was decannulated. He slept over night at hospital. He had tracheomalacia/laryngomalacia. he always seemed to work harder to breath with the cap on when asleep. Awake he was fine......it was when he fell asleep that he worked hard.

Anyway, he was decanned and we brought him home only to discover that he worked just as hard to breath while asleep, kept desatting and finally I called ENT and we brought him back to hospital. Long story short they ended up taking out his adenoids and he was totally fine, satting 100% while asleep........I can't tell you the relief I felt because i was ready for them to put the trach back in..............

The decannulation process is sometimes a slippery slope and we have gone in for several bronchs prior only to be told he wasn't ready.......keep an open mind and keep your fingers crossed. We've been there. It may take a while but I am sure if he does fine with the capping that's a great sign!

Good luck!

Kate
03-10-2012, 07:13 AM
We went through the capping process as well. The dr decided to do 2 nights in the hospital to help us with the process. I liked this because even though he was just observation status I didn"t feel like I was completely responsible to watch him. They actually had him do the 1st night with his speaking valve on and then the 2nd night with the cap. He actually did better with the cap-I think it was because the valve made him dry.

Had we not stayed in the hospital our dr said we'd do it in steps-he'd wear the cap for a couple hours a night for a few days-then we'd add an hour-have him wear it for a couple days-add a couple hours...and so on until he had it on the entire night.

It is a step that makes you anxious and you can't get totally discouraged if he doesn't tolerate the cap-not all kids do. Mitchell was breathing a bit heavier but our ENT said that she had seen kids tolerate it not as well and do fine decanned. Each kid is so different.

Good luck!!! It's an exciting time!!

JWorthington
03-10-2012, 05:25 PM
when Sam was decanned he was tolerating the pmv all waking hours. rather than capping, we used strong tape over the pmv as a form of capping. we did that for a month at home during the day. when he was admitted for decann they were happy to leave him 24 hours with a taped up pmv rather than use an actual cap. he was decanned successfully the following day. maybe it is worth trying to tape up the pmv and see if that works? best of luck :hug:

kadiera
03-13-2012, 01:18 PM
Alexander was wearing a speaking valve all waking hours before we capped, and then we capped at home...He didn't notice when we moved from the speaking valve to the cap. Both of our ENTs wanted him capped all waking hours before discussing decan.

Due to scheduling issues, he was actually capped 24/7 for 4 months.

kshell
03-13-2012, 02:10 PM
Natalie used her passy then capped all waking hours at home. For decan she went in for bronch put in a 3.0 and capped overnight. Did fine and pulled the trach the next day. I think it's rare that these kiddos get decannulated the first time its mentioned. I know we went in once thinking decann and ended up keeping the trach but getting her tonsils and adenoids removed. That was a huge help towards her tolerating being capped. She could barely tolerate the passy prior to having those tonsils removed.
Good luck