Helen, I tried to publish a reply comment to your post below but for some reason my pc won't let me. It sounds like we have both been through very similar things and I'm really sorry to hear that Luis has had to have his trachy re-inserted.
We started capping with Nadia August bank holiday and after 2 days they took the trachy out despite Nadia showing profound recession and a very obvious stridor, which ENT refused to acknowledge, despite everyone around them being concerned. Despite endless requests from me to see her surgeon we only ever ended up being assessed by the rest of his team which I was not happy about but it seemed to fall on death ears.
Anyway 6 days after we were discharged Nadia came down with a pneumonia/chest infection in her right lung which turns out was the result of her aspirating post decannulation. After 6 days in our local hospital on ivs and oxygen we finally managed to get an appointment with the surgeon who took one look at her and requested she be admitted to St Mary's where he could keep an eye on her and blast her with adrenaline nebs. He confirmed that the pneumonia had been caused by her aspirating which was down to a problem in the airway.
After 5 days at St Mary's we were discharged but are due to see the surgeon again next week as things still haven't really improved. The stridor is still present and she now has an NG tube due to the fact she lost a kilo in weight since decannulation!
It's looking likely that we're going to have to have another MLB to find out what is going on and at best corrective surgery or at worst the trachy going back in.
It's interesting that Luis' vocal cord has stopped working again as this was the reason Nadia had the trachy put in..they moved in the wrong direction. At her last scope in July we were told they were moving properly again, however now I'm concerned that this isn't the case anymore. Either that or the trachy has caused a bit of collapse in her airway.
Anyway just wanted to let you know that I know exactly how you must be feeling and hope they manage to work out what is going on with Luis and you get rid of the tube for good!
S x
Monday 21 September 2009
Friday 11 September 2009
Luis update - it's all gone a bit pear shaped!
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
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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