Tuesday, 23 February 2010
Discharged!
Just to let everyone know that Sam was discharged by ENT today -way hey!! one doc off the list. Can I still be a member???
Friday, 8 January 2010
Stoma closure surgery
Does anyone have any advice on the stoma closure procedure? Sam is going in on 9th February to have his stoma closed. Can anyone advice what the procedure involves and what the recovery period is like?
Many thanks
Many thanks
Thursday, 24 December 2009
Monday, 9 November 2009
ACT Christmas Cards
Just wanted to say thanks to Isobel for my ACT christmas cards that arrived this morning. They are lovely, so if anyone hasn't bought any yet, please order them now. You are supporting your charity and getting lovely cards that raise awareness among your friends into the bargain!
Julie
Julie
Monday, 21 September 2009
Decannulation Problems
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
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
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
Sunday, 2 August 2009
Luis is ready for decannulation - help!
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...
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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