My Alex has not used his PEG for 3 weeks as he has finally succeeded in drinking his nutrition. Yeah!! We are 6 months "behind schedule" for PEG removal which we had hoped would be removed by November last year. This was not to be as the damage to Alex's swallow and lack of weight would have made it a suicide mission. Alex was devastated at the time and went into a funk over it (not unsurprising).

So today at lunch (me the meat pie and him half a dozen oysters) I suggested it was time to ring Louise (dietician) and set up an appointment to schedule the PEG removal in a couple more weeks.

His response? He wants to wait awhile in case he needs it. Except that since he realised he can drink ALL of his nutrition, he won't use it because it takes time and restricts his movement. Additionally, since he refuses to do it overnight anymore, he would procrastinate long enough to do it just before bed which would cause reflux. So, the likelihood of him using his PEG again is zero making this an excuse, but why???

One of the reasons may be that he is scared of pain. When I mentioned that it is a lot easier coming out than it was going in his immediate response was "you said the tube going in for the pleurodesis wouldn't hurt and you lied!!!" Well maybe we were told it would be quick and wouldn't hurt so much but he was supposed to forget the pain afterwards. Unfortunately, the insertion of the tube was a bit of a production due to inflammation and he hasn't forgotten it.

Is it possible he has become emotionally attached to his PEG (after all it DID save his life)?
Is there someone out there who can reassure Alex?

I wasn't sure when I was writing this if I was venting or asking for help so this is possibly in the wrong place as it turns out I actually need guidance on how to handle this and maybe get some insight into other reasons behind Alex's sudden reluctance to have the PEG removed.

Your experiences please

Karen