Oh well, we have a failed decannulation under our belt! After 5 days of being tube free Luis has had to have his trachy re-inserted as his left vocal cord is no longer moving and his airway is once again too narrow due to some angry inflammation - and the reason for each seems to be a mystery to all.
His breathing continued to be noisy so our very cautious ENT surgeon wanted to scope. She was expecting to find some grannulation tissue so was quite surprised at what she found. No answers as to why so far, they haven't come accross vocal cords that stop again after a recovery - does anyone else have any experience of this? So this combined with the swelling meant the safest and easiest option was to re-trach. The other option was to observe him on ITU for a week, but after a night on a very uncomfortable chair I'm quite glad they chose against that!
When we were sleeking over, we were using Opsite which Luis developed a nasty reaction to. An ENT Fellow (not come across a Fellow before!) said the inflammation could well have reached his airway and that may be our answer to the airway swelling. So there's a tip for anyone approaching decannulation, choose your sleek carefully and test the area around the neck for reactions beforehand. We've used Opsite many times before: on his face when he had his NG tube, on his hands for Amnitop and never encountered any problems before.
Hopefully that is the problem and we'll be able to try again soon. They have said they will scope again in 6-8wks so we will see. In the meantime poor old Luis faces a week in hospital before ENT do the first tube change. Luckily we don't have to spend 8 further weeks being trachy trained like we did the first time round!
Luis is well though, it wasn't gone long enough for him to get used to it but it's very odd to be back in near silence - we soon got used to the noise!
Thanks to everyone for your advice and support.
Love Helen x
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5 comments:
Oh Helen, I'm so sorry this has happened. it does sound very odd that his vocal chords stoppedmoving, I really can't understand that. hope its just infection as you thought and you can try again in a few weeks
(((HUGS)))
Juliex
I'm sorry to hear that decannulation didn't go well first time.
For some it is a waiting game, and sometimes the ENT folks decide to leave things for as much as a year to let nature take its course and let the natural growth progress increase the airway. Lui was a bit pranoid about being blocked off before and 6 weeks doesn't give him much time to get over that. I know it sounds hard but I would say don't push them about deccanunulation, sometimes it is better to wait.
Sorry to be a Jobes comforter
Every best wish for a good outcome
June
Hi Helen,
I haven't been on the Blog for ages and can't believe all that has happened since I last looked at it. I am SO sorry to read that you and Luis have been through the mill somewhat recently and can only imagine the mixed emotions that you have all had to cope with. I always thought that the unpredictability of anything to do with trachys was one of the harder things to come to terms with. Wishing that the Consultants would have the magic answer to how long things would take and know exactly what was going on inside their little airways. Hard to come to terms with life never being that clear cut or simple! Guess we just have to pick ourselves up again after the disappointment and try to "carry on as normal" until the next scope date. I really hope that you can get some answers as to what is happening with Luis' airway and that you can look forward to successful decannulation on the near horizon...! Will be thinking of you all during these next couple of months,
Amanda
Hi Helen,
Just wondering how you and Luis have been getting on. As you know I posted a bog recently as Nadia had been decannulated. Anyway past 8 weeks have been hell and after several trips back and forth to our ENT and still no progress we managed to get a second opinion privately at GOSH. Thank god we did she was basically breathing through a hole the size of a pin head and if left any longer it could have proved fatal.
Bad news is the trachy is back. Turns out that the vocal cords aren't moving properly yet contrary to what we were told by out NHS consultant.
Unfortunately there was too much swelling to be able to take a proper look so scoping again in 6 weeks time to try and work out what is going on. Looks like we're going to be stuck with the trachy for at least another year though
:-(
Hi Helen,
Just wondering how you and Luis have been getting on. As you know I posted a bog recently as Nadia had been decannulated. Anyway past 8 weeks have been hell and after several trips back and forth to our ENT and still no progress we managed to get a second opinion privately at GOSH. Thank god we did she was basically breathing through a hole the size of a pin head and if left any longer it could have proved fatal.
Bad news is the trachy is back. Turns out that the vocal cords aren't moving properly yet contrary to what we were told by out NHS consultant.
Unfortunately there was too much swelling to be able to take a proper look so scoping again in 6 weeks time to try and work out what is going on. Looks like we're going to be stuck with the trachy for at least another year though
:-(
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