Oh my gosh. I am so sorry you are having to deal with all that. I agree that you need to get people involved over their heads. And the next time you see your doctor/surgeon you need to tell them everything that has happened. Believe me they have a pretty big say in stuff. And KEEP sticking up for yourself. I know it's hard with the trach. You might keep a sign like NO!!!! or GET THE DOCTOR NOW!!! on one page sheets to hold up when you aren't getting the point across. It's nicer than hitting them ;-)

I will pray that you are able to get some help and that they are able to get the doctor to figure out what is wrong.