Luis has had his trachy since he was a month old. He had heart surgery which left his vocal cords paralysed and had a grade 3 stenosis due to repeated intubation. We didn't know if his vocal cords we're permanently damaged or just bruised but over his 2 years with his trachy things looked like they were moving, albeit slowly, in the right direction so we've just got on with life with the hope that one distant day he would be trachy-free.
He went in for a LBT on Thursday, just a general review so we didn't get our hopes up but we were flabbergasted when his ENT surgeon announced he could be decannulated, not least when they said they'd start the process straight away. OMG!!!
First stage was to downsize his tube which he coped with fine but we have really hit a wall with the next stage which is sleeking over the tube. On the one hand Luis has only really ever known breathing via the trachy so the sensation of using his upper airway is completely alien to him, but on the other hand he is 2 and terrible - he really doesn't like being messed with and will fight against the silliest of things like having his nappy changed and he is absolutely refusing to let anyone tape over his tube.
It is so frustrating. We can occlude at night, when he is completely zonked out and he is fine, sats 100%, all going brilliantly. But the minute he wakes and realises that the sensation is different he pulls off the tape and we then can't re-tape while he's awake.
We've been at this for 3 days now, and the hospital are starting to talk about sending us home and the trial not working and I'm just desperate as I know he can do it. Medically everything is okay, it's a psychological, behavioural thing more than anything else, I think. I know he has to re-learn how to breathe but we also need to get round his stubborn 2yr old mind.
We've been playing around with his swedish noses during the day, covering them with clear tape to increase the resistance and that goes well as he can't see the tape so doesn't think there is anything different about them, but he is still relying on the leak around the tube rather that using his upper airway.
Does anyone have any experience with this or any advice they could offer, we really are struggling. This is something we thought would happen one day but not in the near future, so we hadn't in any way prepared ourselves or looked into the process and how best to prepare Luis.
This is an amazing situation to find ourselves in and I just really want to make it work - I can't even imagine the impact it would have on our lives to be trachy free, I guess you all know what I mean.
Love Helen (& Luis x)
PS - Sorry for the very rambling blog, it's been a long few days...
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6 comments:
Does Luis wear a speaking valve? we tried decannulating Sam before he could tolerate the speaking valve and it didn't work, he got really stressed and fought and fought against the tape. The speaking valve is an aid to decannulation, we got Sam up to wearing the speaking valve all waking hours and then began to tape it up a little at home. When he was admitted for decann they just sleeked over the speaking valve and after 24 hours removed the trachy. With the speaking valve air is allowed into the trach but not out, so this is a good first stage. Good luck xx
Congratulations on the good airway news. I'd maybe try and relax a bit, basically the biggest issue is now resolved, you just need to work on getting Luis to co-operate. Have you tried a star chart/ bribery (I know, but worth a try) - Dominic always responds quite well to chocolate buttons!
Also, as Julie has said, a speaking valve is a good idea too if you don't use one. Dominic isn't too good at wearing his for me, but will happilly have it on all day in nursery. So, it may be an idea getting someone else to try it.
And remember, he'll be picking up on how desparate you are to get him to tolerate this - and so, in typical toddler fashion do the opposite. So, just try and make him realise you are not bothered, but keep subtly trying every so often.
Good luck and hope this helps.
Laura
Hi, thanks so much for your advice, much appreciated.
To update, the first attempt didn't go well so we came home and gave ourselves and Luis time to get our heads around what we needed to do.
Luis has never tolerated his speaking valve and would throw a wobbly at the mere sight of it so we decided not to use it for this, and instead stuck to occluding his humicoils (swedish noses) with good old selotape - not very technical but it works! So over a period of 2 weeks we progressed from gradually building up the level of occlusion throughout the day to him wearing a fully occluded one all day.
Luis was admitted on Thursday and was decannulated this morning and so far so good with 100% sats. He's had a few blips when he's cried and his sats have dropped to 70% but he's recovered well. We're all hoping it's a case of him adapting to his new way of breathing as his sats are improving with each cry - last upset (bedtime trauma) resulted in 88% sats so definitely improving.
We're all still very nervous though, not wanting to take anything for granted or get our hopes up too high. And although I used to hate it anytime ENT would say it, I'm beginning to fully appreciate that the trachy did equal a safe airway. I'm very aware that the safety net has now gone.
So thanks again, it's helpful sometimes to just sound off and know that someone out there knows what you're talking about. I'm back off to stare at the sats monitor some more!
Wish us luck
Helen, Nigel & Luis x
Dear Helen, Nigel and of course Louis. Thank you so much for sharing your news. You may not be aware that the very many visitors to the site, from around the world, derive considerable comfort from the knowledge that others experience similer difficulties. So often a problem shared is a problem halved!
Thank you on behalf of many and please continue to keep us informed of progress. Good luck.
Webmaster.
Really glad to hear that things are improving now.
Best wishes to you all and good health we hope from now on
Glad to read this Helen, congratulations to you all. I am sure these blips are just Luis adapting to this 'new way of breathing' as long as he is calm and doesn't seem to be working too hard I am sure everything will turn out ok. Try not to spend too much time staring at the sats monitor - remember they can give false readings - and of course, no one ever monitors the sats of healthy children so we have no idea if 'typical' children drop their sats from time to time. Keep us posted on how he progresses.
Julie x
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