Thought I should address this.
Am I disappointed? Yes. Most definitely.
Am I relieved? A little bit. It's a solution
Are you surprised?
Just over a week ago, had you asked me what the worst possible outcome of all Caelan's respiratory issues could be, I would have answered a tracheotomy. I felt that it would have made the past three months all for nothing. I couldn't imagine anything worse. We had so many plans and dreams for the following year and they all involved Caelan being trache free.
Then last Sunday happened and I got 'worse' in technicolour. It put everything in perspective for me.
A tracheotomy is not the worst thing ever. We were doing it and doing it well for the past three years. It works for Caelan. We know this. We've done this. We can do this again.
Yes it's scary. However, I'm hopeful that with his cords pinned open it will buy us a little time when doing trache changes. Instead of seconds, we should have minutes. Hopefully it won't send Caelan into a complete panic because we know he's got a pretty decent airway without the tracheotomy. We'll just have to wait and see though.
Along those same lines I'm hopeful that Caelan will tolerate having the speaking valve on his trache. That would be so cool! Not only would he be able to create more sounds and continue to work on the whole speaking thing, but it will be good practice for him if and when ever he decides it's time to decannulate.
See, I really think this is just Caelan getting his way, again. He's the boss. He knows what he likes and what he doesn't. I just simply wish he'd found an easier way to let us know that he wasn't ready for this big step. The good thing is going forward we'll be able to test out whether Caelan is ready for decannulation or not without having to go through any big surgery. Now that his cords are pinned and we're confident that his upper airway is good we'll be able to 'cork' or 'plug' Caelan's trache periodically to test his readiness for removing the trache. We can start slow and build up to longer periods of time so we'll know for sure before the next surgery if it's going to work.
The surgeons suspect that Caelan has a soft trachea - tracheomalacia, particularly in his lower airway close to wear the trachea branches off to the lungs. For Caelan this means that his trachea collapses in on itself as he inhales, probably more so when he's upset. They hadn't seen any strong evidence for it before. The good news is that as Caelan grows his trachea will strengthen and harden, so he'll basically grow out of this.
The down side of the tracheotomy is having to rely on nursing again. I shouldn't complain though, we've met some amazing nurses who allow us to sleep at night. I can only hope that we'll get some of them back. I've been pushing for Discharge Planning and CCAC to be contacted because we need to start that ball rolling if we want to get home soon. There's no delay for us to stay in hospital and learn trache care, we've done all that. It's just a matter of waiting on nursing after that first trache change.
Other than that, I'm just really sorry my little dude won't be able to swim in the tub like he was loving!