Today we had Mr T’s appointment with the ENT specialist. All up we were there for 3 hours, starting with an xray and then a long wait before the doctor could see us. She took some history and asked lots of questions, and then a bronchoscopy to see what was happening in his airway.
Now THAT was fun – a camera on a long skinny tube fed through his nose down to his larynx. He screamed the whole way through it, and the first time there was too much mucus to see through so they pulled it out to start again. Luckily this time they did get good pictures as it was getting to be too much to watch let alone go through, the poor little boy. He is amazing though, so resilient and again as soon as they took the tube out he quitened down then went straight to Mummy K for some much needed snuggles.
The doctor confirmed that he does have laryngomalacia, as well as the nasty old reflux. It was hard to follow and remember all the details but basically it’s a chicken and egg situation – one makes the other worse which then stirs up the first one. His epiglottis (I think) was very swollen and red, but he only has a mild case of it so he doesn’t need an operation thank goodness. She has told us what to look out for if it worsens, in which case the op may be needed, but I think that’s not likely to happen. It often peaks around 6 months, and then starts getting better and usually grown out of it by the time they are 18-24 months. Already his stridor breathing is less frequent than it was, but he’s still having issues when he’s feeding and often gags and gasps for breath. She also seemed a little concerned about his weight still, and said she would be happier if he was gaining faster than he is (he is gaining well now, and has been for the last 6 months, but he’s still in a much lower percentile than when he was born and compared with his other stats).
So basically we’re continuing with the losec to keep on top of things and make him more comfortable. We know it could be a lot worse too, but it’s so hard watching him in pain and struggling, let alone having such invasive tests done. We are so proud of him though, no matter what he’s been through he is so brave and trusting of everyone he meets and above all he’s still a happy, easy going boy.