Fletcher's Current Struggles

Yesterday Fletcher had a pretty rough time. When I got to the Children's Center he had been bagged three times and I had to bag him twice myself while there. He seemed to be in a good mood most of the time and yet, every so often and very quickly, he would start to high pressure and desat. I was under the impression that his trach was too loose which would cause it to move around and perhaps get blocked off. I could fit most of my hand between the ties and his neck. I asked the RT to tighten it and she did but I still noticed that whenever he turned his head to the left he got uncomfortable. I told this to Denise and when she was there he was having similar problems. The RT's didn't want to change out his trach saying that when they bagged him they felt no restriction. I may be weird here but, Fletcher had similar problems a while back - almost exactly the same symptoms. When they changed out his trach most of the problems went away. I don't really know why trying to solve this problem in the same way would not work. If nothing else, how could it hurt? Anyway, my wife had his trach changed out this morning after another bad episode. He had to have some poking and prodding done on him which didn't help matters with his mood. We've also asked that his Robinol be dicontinued since that can cause thicker secretions and also itchiness (he's scratching at his head like crazy now). Hopefully these steps will help him since he's mostly happy and doesn't act "sick". The tests that they did shows that he doesn't seem to have any bugs unless he has one of those "catchall" viruses that doctor say you have when nothing else fits.

Just a little info here about our weekend and a short rant about how well parents are listened to by "those who know things" in the medical field. If I am wrong about the problem then I'll admit it but, it still doesn't mean that every little thing we can do to make things right shouldn't be tried.