Kris has recently been having problems with his TEP speaking valve. Every time he swallows he coughs and coughs. I rang the ENT department at our hospital and they saw us right away. Not only was he leaking through the valve, but also around it, there was also a lot of play in the valve - it moved a lot when I cleaned it. Once they removed the valve it was evident that the TEP puncture site was indeed quite large.
After some discussion we all decided the best idea is to let the hole heal and close a bit to make it smaller. At the same time we want to keep the hole. So he now has a 18 gauge suction catheter through the puncture into the oesophagus and the other end out the stoma and taped onto his neck. We will return on Monday and hopefully put a smaller catheter through. In the meantime of course he can neither communicate or swallow. Fortunately Kris has not been keen to have his PEG removed even though he has not used it for 10 months. So we are back to PEG feeds. Hopefully he will now not be at risk of an aspiration pneumonia.
This is a never ending journey of learning and adapting.
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!