You have travelled a very rough road. I have no useful advice whatsoever to add to the main issues you're having with Ron. The only thing that might be of use is my advice about the swallow test. You hint that you might be suspicious that Ron is eating or drinking by mouth and may be keeping it from you. If that is the case then it's really important that he is honest about that when he has his swallow test because it can have a huge impact on how the test is interpretted. If, for instance, he's been "sneaking" a good amount of food and fluid on a daily basis and has NOT gotten pneumonia as a result then the SLP might be more confident in his ability to eat safely even if his swallow x-ray doesn't look perfect. If though, he had nothing to eat or drink at all since his last test and the swallow doesn't look so good, the SLP might be very conservative about him moving forward with eating for fear of risk of aspiration pneumonia. So, bottom line now is that if he has had food and fluid and NOT gotten sick then that could be a good sign! Make sure he understands this and is honest about it - it's more important that the SLP has ALL the information to base her judgement of his ability to eat than worry about not being totally honest about eating!
Good luck!


Jennifer (39)
02/10 SCCa Tongue & Base, HPV-
03/10 Partial Glossectomy & ND 11/10 Revision due to additional nodes 12/20-2/2/11 IMRT & concommitant chemo 2/11 PEG in 3/11 PEG out
Back at work and feeling good 03/24/11!
12/20/11 - 9 month f/u PET/CT - all clear!