Yay finally some results

Well we finally have found the answers we have been waiting 13 months for. The bronchoscopy revealed that Trinity-Storm has a very narrow trachea and her entry way into her upper right lung is also narrow. What that basically means is that she has to work extra hard to breathe and when she gets sick her airways almost completely close up. So when she had cardiac failure a few months ago that was because her airways were completely blocked. So we have arrived back home and she will be having CPAP (continuous positive airway pressure). This will be on whenever she sleeps longer than 45 minutes and especially at night. The pressure will open up her airways and help her to breathe easier. This is a trial and error thing to see if it improves the narrowness of her airways. They will review in 6 months time to see the difference. If that doesn't work then I'm not sure what they will do. But as she grows her trachea should grow as well. She has just 1 feeding tube now which is still the nasal jejunum tube. She has a video swallow test coming up and we will be able to see if it is safe for her to have a bottle. If it is then hopefully she will drink orally and we can get the tube out altogether. Initially the docs had thought that she was aspirating but on closer inspection it shows that she wasn't! So that is great news for us and her! The reason why she refluxes is because she has to work so hard to breathe. So every time she eats it kinda fills her up faster and she can't handle it so she refluxes. But this will hopefully improve in time. Everything is about time and waiting at the moment. But we have waited 13 months I'm sure we can wait a little bit longer.