I've been trying to post a reply - but keep getting an error - so I'll put it here for now
Sorry for not posting another update - between work (new boss), kids, and running to sit with him everyday, I lose track of things....
He's still hanging on - in grave condition, but kind of stable. He is still refusing nutrition and only wants enough water to flush his meds through the tube - I'm guessing that's only about 12 oz a day. He can barely lift his head to use his eyegaze - it's very sad. He refuses any kind of neck support, so he lies/sits there with his head hanging down alot. The hospice nurses are doing what they can to make him as comfortable as they can, but some days it just isn't enough. The hospice doc checks on him every morning. I'm guessing he only weighs about 100 lbs now. He has made it clear that if he becomes unresponsive, no nutrition or hydration should be given.