Just spoken to my Bro and his lil man has had his heart surgery fine and all has gone well with that, but his bronchial (I think) airways are quite floppy. There is talk of a tracheoctomy to help him over the next couple of months to see if it gains strength...
If anyone is in a similar position please let me know. Either here or via PM if you are shy
Hi Rilith, Harry was diagnosed with a floppy airway - but only after 2 yrs of breathing probs and us resorting to going private. I always knew his breathing was different to other kids with ds because it was very noisy all the time, not just when he had a cold, and he'd quite often get distressed and be rushed to hospital. At least your nephew has been diagnosed early - the dr told us that Harry's airway was opening and closing as he breathed because it was so floppy and it made it impossible for him to clear his throat of any mucous so it would build up. Harry never had a tracheotomy, although that first year was pretty much constant hospital visits so it probably would have helped. That must be scary for your brother, I'm guessing they will do that as a last resort. Harry is now 4 yrs 7 months and is a completely different child, it has got alot easier for him since he started walking and his muscles have got stronger. Even though its really difficult for your nephew at the moment, hopefully knowing that it is something which will improve in time will help your family get through this difficult stage xxxx
I knew there would be someone on here in a similar position. He isn't online a lot ATM, well he is still practically living at the hospital, so hopefully once he is home he can get on here and ask these questions himself.
Post by pinkshell1110 on Nov 16, 2008 20:47:42 GMT
hi rilith nice to hear from u charlie also has floppy airways ! it is quite copmmon in DS they were on the verge of givin charlie a trache after his 2nd heart surgery, but fortunately i asked them to persevere a little longer,thankfully steroids did the trick ! the problems it causes charlie have usually been after an anaesthetic when they take the tube out and also when he has a chest infection or a cough, it usually causes his airway to go into spasm causing stridor..thankfully it can be treated with a course of steroids,but it can be very scary at the time. i also think (but not confirmed) that it affects his asthma when he is wheezy,the paeds say that anything like a sneeze,cough ,vomitting can set it off. hope all is well for u all lotsa love shell,charlie and jasmin xxxxxxxxxxxxxxxxxxxxxxxxx
Gemma has tracheo broncho malacia which is a very floppy airway. Her breathing is very loud and rattly and gets worse if she has a cold or is unwell. It doesnt really affect her too much although she does get out of breath if she runs around alot. We are told it will eventually go. As she gets older and her airways strengthen. She does suffer alot of throat infections and this obviously aggrivates the airways. They did mention once about a tracheotomy but we really dont want that. The worse time for Gemma is when she has a cold and she has loads of mucous stuck in her throat and she wakes up coughing and gagging and sometimes makes herself sick. Hopefully once your nephew gets stronger it will improve xx
Ruby has this problem too. Since all her surgery last summer her breathing is very rattly, she makes strange noises when she yawns and cries and in the middle of the night too. They wanted to do overnight sats monitoring but she won't keep the sensor on!! Anyway, she is having surgery soon to try and sort it out, hopefully.