TrachKids.org

Hi all,
I just wanted to see if anyone had any advice for our upcoming decanulation trial. Dominic had tongue reduction surgery on the anterior portion of his tongue in January and is booked to have an adenoidectomy, removal of granuloma, grommets and another scope in 2 weeks. They are still unclear whether they will try to decanulate him in the same admission, or have us go back 2 weeks later.
Dom has a chronic lung disease (bronchiectasis) and has lots of secretions, requiring regular suctioning (25+ times a day when well, almost 3 times this if unwell). He has been vocalising and breathing around his trache almost effortlessly since the tongue reduction, however when we try to put a modified portex speaking valve on him (which he loves), his secretions thicken up within half an hour and I have to put his HME back on or give him a neb. Other than this he handles the modified valve well. We're going to try him with the passy muir valve which hasn't been modified and see how he copes with it over the weekend. I've also noticed that during the day, I can hear the sound come out of his mouth when I'm suctioning him. By that I mean the sound you normally hear as the secretions start to run up the catheter.
The other night I tried occluding his trache (while monitoring his SPO2%), he hasn't had a tube upsize for over a year and as I mentioned, during the day breathes effortlessly around it. Unfortunately he struggled to breathe when I occluded the tube in his sleep though. I'm not too concerned about this since his respiratory physician has always maintained that it's highly likely his large posterior tongue means he will need night time airway support like CPAP. And we are well prepared for this with a mask fitting planned before the trial, to get him used to the idea.
Just wondering if anyone has any information or advice. We understand that we won't know until they try, I'm just hoping that some of you may have experience you could share. :)
 
Thanks a bunch!
Mel
www.keepingtrach.com