We have to be at Southampton at 9.30 in the morning on Monday for Gemma to have a Bronchoscopy. Im not looking forward to it at all as they have to sedate her to stick a camera down her throat. The reason they are doing it is because for ages she made a really loud rattling noise (its hard to describe) she was doing it for months and then it stopped but every time she is ill she makes this noise. Her Consultant thinks its a floppy airway, Southampton thought they may have damaged her airways when she had the ventilator in for so long after her heart op, but no one seems to really know, so they want to have a look and see if they can see anything. Has anyone elses little one had a bronchoscopy before.
Hi Debs, Harrison had the same procedure, Dr Sheehan did it for us at Manchester Childrens Hospital. Exactly the same scenario, his breathing has always been very noisy and they thought it may have been down to damage in the airway caused by being ventilated many times when he was little. It turned out there was no damage and the noise was down to the fact the muscles in his airway are just very floppy, when he breathes the muscle flops up and down (I'm sure there's a more medical way of saying it :)but that's how I understood it).
It always worried me before I knew what caused it because I know it's expected for our children to be wheezy but I'd never met another child with ds whose breathing was as loud as Harry's. People constantly say to me 'oh dear he sounds very chesty', I just tend to agree with them if I don't know them well otherwise I'd be constantly explaining to people why his breathing is so loud!
Dr Sheehan told me that it would gradually improve as Harry gets older and his muscles get stronger. Since he started walking a few months ago I've definitely noticed a difference + I've recently started doing physio on him every day which just involves a couple of 10 minute sessions and I think that has helped too.
I think I've rambled on a bit there, hope it all goes well for you on Monday. Big hugs from me and Harry xx
We get exactly the same with Gemma, people look at us when we are out as if to say why are you out with such a poorly baby, sometimes I explain to them (but its very complicated trying to explain it) other times I just glare at them. Lol. What you have said has really helped, and Gemma sounds very similar to Harrison so hopefully hers is only a floppy airway. Did Harrison come home the same day, and how was he after the Bronchoscopy. Thanks for your reply, its put my mind at rest. XX
You probably won't see this now until after Gemma's op, so hope it all went well. Harry came out the following morning, they kept him in overnight on oxygen as a precaution because of his history of breathing problems, but the other kiddies who were in the same day went home that day. He was pretty peed off when he woke up, but he always feels a bit rough after a general anaesthetic, until he's eaten something anyway, lol. Nice to know I'm not the only one who gets irritating comments from people who always think Harry's ill, when he's not at all, he just breathes really loudly! (I mean that in the nicest possible way, just reassuring to hear someone whose had the same experience). Most people look at me blankly if I explain why he sounds like darth vader! His breathing is certainly heaps better now he's a bit bigger and walking so I'm sure little Gemma will be the same, bless her. xx
Thanks for the above unfortunately we had to cancel Gemmas appointment. Gemma had really bad croup all nite Saturday, and now she has a stinking cold so I spoke to the Consultant this morning and he said it was too risky to do it when she was unwell. So now we got to wait for another appointment. I had psyched myself up for it and got the other kids sorted out but never mind theres no point doing it until Gemma is 100% well. Now she has a cold she is rattling like I dont know what, she is in competion with the TV as we have to turn it up so loud to hear over the rattle. lol. Will let you know when we get a new date thru xx
We are very often at Southampton Hospital because thats where Gemma had her heart op so we have regular check ups for that, and now we will have appointments for Respiratory. Its a very good hosptial. xx
Post by pinkshell1110 on Sept 18, 2007 17:24:08 GMT
oh hope gemma is better soon.charlie has exactly the same problem they also thought it could have been down to being ventilated,he had the bronchoscopy 2 weeks ago when he had his adenoids out,funnily though we hardly hear the noise now ,and all was well ,they too said it was just a floppy airway and will improve as he gets older and stronger he also gets croup quite often which i think is also mostly down to floppy airways ,hope all goes well when gemma's better xxxxxxxx
Im hoping thats what they are going to say about Gemma when we eventually get it done. Its reassuring to know that shes not the only one with a rattle like an express train, and that it does seem to improve after time. xx
Aaron had the same procedure done a couple of years ago when he was 18 months because he had a continuous rattle. They found that there was nothing really wrong with him, possibly catarrh. But they did find that the top right chamber of his lung was partially deflated and that the tube to it was narrowed. Not sure if it was something he was born with, or scarring as a result of all the chest infections he had when he was small. Thankfully he seems to have grown out of most of his rattles!!!
Thanks Lynne. Its good to hear that all the children that have had it done, they have found nothing serious wrong with them. We are still waiting for an appointment but hopefully wont have to wait too long as I just want to get it done and out the way. xx
Sounds like I might have this to look forward to as I posted about Jasmine's breathing and it sounds quite similar, she sounds like Darth Vada often too. At the moment I'm told it's just newborn mucus that she hasn't been able to clear. They wanted to put some tubes up her nostrils to check they were fully open and do a chest xray but she has also been full of a stinking cold so I'm waiting until she's better. Hope Gemma is getting better. x
Well fingers crossed we are off to Southampton again tomorrow for Gemmas bronchoscopy. I have had a stinking cold and was really worried Gemma would get it and we would have to cancel again but touch wood she is well so it should go ahead. I am not looking forward to it but just keep thinking this time tomorrow it will all be over. xx
Well Gemma finally had her bronchoscopy yesterday. It was a long day. She was so bubbly and happy when we took her down for it, and then half an hour later when they called us back after they had done it and she was laying on the bed on oxygen it was really upsetting. She slept for a couple of hours and then once she woke up she was able to come of the oxygen. She was awful when we got her home had a raging temperature and was very grumpy but today she is 100 times better. They found out that the reason she is so loud is because she has tracheo bronchomalacia (sounds impressive lol). It basiscally means part of the right side of her trachea is flat instead of rounded so all the secretions and muck she gets from colds builds up because she cant get rid of it and that is why she is so noisy. There is nothing they can do about the flat trachea and it is not effecting her apart from the secretions so she has been put on a medicine which should hopefully help to stop the build up of secretions and then hopefully she will become quiter. We have to go back for a check up on the 13th December. I am just so relieved she has had it now.xx
Max - I think the trachea will always be flat but as she grows she should improve and the medication they have put her on should help. Your right since having Gemma I have learnt so much, when Im explaining stuff to friends etc I sometimes feel like a medical dictionary. lol. xx