Hospice is still recommending the pump-the thought of having that inside his body bothers Glenn. There would be constant refills of medication and battery changes, I just don't know if it is worth it. Our nurse Deanne has been out of town, she will be back on Monday so we have decided to wait and speak to her more about it first. It was kind of funny I was explaining some of the risks involved and many of them the doc had never heard of-(a different doc would be the one to put it and maintain it) he said, "Well you were not kidding when you said you had already researched this were you?" :) Kind of funny, but when it effects your life every day you seem to be much more interested in what is going on. I don't blame the docs, most of them this is the first case of SPS they have actually seen, not just read about. If Glenn still does not want to do the pump, I will not push him- his body-his choice.
I am taking this week of work to spend some time with Glenn, he seems to be declining rapidly and the medication changes are almost daily, I feel like this is where I need to be right now. I am so glad I work with such an awesome group of people that understand and support me through all of this- I can count on them and that takes a huge weight off of me. I am very lucky.:)