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
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2 comments:
Hi Sarah, I had been thinking about you and Nadia recently and wondering how things were going. It was "good" to read your recent postings, although I realise that good is probably not the best term to use about what has been happening to Nadia recently! What a blow to get as far as decannulation only to find that it wasn't successul. Although living with a trachy can be so hard, at least you can be relatively confident that Nadia has a safe airway, and that it is likely to be a waiting game until decannulation is discussed again. Hopefully you can focus on getting Nadia's weight up again so that she can grow and get stronger again, and thankfully airways grow and develop as a child gets older and bigger. Good luck for the next scope and I hope that it will give a better picture of what is going on and what the next course of action might be. Thanks for sharing your experiences with your fellow ACT friends and lots of luck over the next few weeks.
Amanda
Hi Sarah
Sorry for not checking this sooner, it was decided in the end that they would review Luis in the Spring so we have just kept our heads down and got on with things. I almost prefer a steady life with trachy than an uncertain one without - and I never thought I'd be saying that!
Thank you so much for sharing Nadia's story, I do hope she is getting on well and please keep me posted.
Helen x
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