Hi Callie, so pleased you are getting your head around this.
Do not take the whole trache tube out, this would present a huge danger of then losing Dons airway by not being able to reinsert the tube. You are doing the right thing by cleaning the inner. That's all that needs doing. Are you able to suction Dons mouth and throat for him? This should help if he complains of too much mucous. I think the presence of the tube will also cause pressure and be uncomfortable for him,maybe that's what he is feeling coupled with the presence of the tumour.
I am praying that your insurance co. Will cover things for you. Please get this 2nd opinion as quickly as you can. I certainly hope Don will go with the surgery. It gives him a chance of life and a chance is better than none. As I have said, Kris is doing well - though I am scared to say that incase I jinx him.
Thinking of you all and praying,
Tammy

Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!