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    Moving forward

    I guess I need to start a new thread. My “Struggling” thread felt like home. However, it’s no longer in the proper category. As of today, things are going well. I got caught up on work stuff as that just keeps mutlipying with out regard to anything or anyone. That was a hugs monkey off of...
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    Brian gained his angel wings

    At approx 1:07 this morning Brian went home to be with the Lord. DD and I were at his bedside. He went very peacefully. DS has just left not long before and came back with our call. This coming Jan 17 would have marked 39 years together. Feb 16 would have been 34 years of marriage. We...
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    If your Eyegaze needs repaired - beware

    Hi All, Wanted to let you know something that you may not. This is Medicare rules. Brian’s eyegaze computer blew up a couple of months ago. We have it back for repair. Here is the kicker. You have to go through all the same paperwork you did when you purchased it. And you need a face to...
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    Robinul/Glycopyrrolate Thoughts

    Hi all, I am not a Dr. and I don’t play one on TV. I’m just a CALS who pays very close attention to what meds my PALS is on and how they affect him. I want to relate something I’ve learned so that you may be aware of a possible side effect of this medication. Brian has been on Robinul for...
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    Hospice Care on a Vent

    Hospice Care on a Vent or Home Health, not Pvt Duty Hi All, Tossing this out there to see if anyone, in any state was able to find Hospice Care if your PALS was vented. Or Home Health, not Pvt Duty. I currently can’t even get Home Health in for wellness checks. If you were able to get that...
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    Struggling

    Sometimes I even hate to do a rant like this because I feel like I'm whining. It's taken me 24 hours to get up the courage to put pen to paper, as it were. Yes, I'm struggling. The why has multiple reasons. These are on no particular order. 1) sleep. Hasn't been going well. Mostly due to the...
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    Day at the Hospital - for me

    Well yesterday was interesting. I got up and could barely move. At first it was just a slight annoyance, then the pain grew worse. Thought for sure it was a kidney stone, as I've had those before. Had to call our son home from work and my MIL over, just called her for help but then realized...
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    Vacation update

    At Tillie's request, I'm starting this thread about my decompression vacation. Had this trip planned and tickets bought before I last fiasco. So glad I did. When checking in at home Brian is doing fine, his old self, like nothing happened. I did clear this trip with him before leaving and he...
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    Very concerned end is near

    Hi all we are still having issues and now is eating is almost non-existent. He doesn't want me to call anyone. Not sure but, I have a feeling his body is shutting down on him. Hugs, Sue
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    More changes and workarounds needed

    Hi All, Well, after all of this time, we are back into progressions. Our newest development is that Brian is now getting slightly tachicardic when I feed him. We've had to slow that way down. I may have to figure out how I can thin his food enough to go back to the pump. I did an experiment...
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