Recent content by LeslieR

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    Changing out G tube

    The Gbutton Balloon should be deflated with a syringe prior to removal. There should be no yanking to collapse anything. The new button slips in and the balloon is re-inflated , usually with 5 ml of water. There should be no pain.
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    Dad died

    I'm so sorry for your loss. Know that your Dad knew and felt your love. The disease is a beast and totally out of anyone's control .
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    A question about a new diagnosis

    Sorry Kristen. What you describe sounds like how my Father progressed. It was very rapid all the way to the end.
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    My Dad Died April 9th

    It has been such a busy time and I hadn't had a chance to post earlier. He was diagnosed 3/23/2017 and progressed rapidly. By May 2017 he was on AVAPS, July 25th he got a feeding tube and by December he had pneumonia and after being intubated for a couple of weeks went home on the Trilogy. He...
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    Paul's Ferd

    So Sorry for your loss.
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    Dad is actively dying

    Hi everyone, my Dad is now actively dying. He started rapidly deteriorating over the weekend. He couldn't inhale well and was gasping for air. He stopped tolerating his tube feedings and were increasing is morphine and Ativan doses everyday. On Monday the hospice determined that he was eligible...
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    no sleep for 72 hours

    That sounds horrible! I am so sorry!
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    My Dad

    We got some toothettes! those have helped tremendously with the dry mouth. He had a horrible horrible day yesterday and I really thought it might be it. He couldnt really inhale and was struggling to breath even on the trilogy. We gave him ativan and morphine and called the Hospice nurse out to...
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    My Dad

    Thank you all very much for the cyber hugs and well wishes - and I send them to you all, as well! Wishmobbing, he is thirsty and wants fluids (in his Gtube) he is get 3-4 cans of formula a day. He used to get 6 per day but he feels too full and bloated and doesn't tolerated that much volume...
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    My Dad

    Dad continues to sleep more and more. Sometimes its hard to tell if he is asleep or just resting with his eyes closed. He Is no longer taking any breathing treatments, his urine was bloody last night (he has a catheter in) but no fever. He doesn't tolerate his feedings as much but he is still...
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    My Dad

    The weekend was rough. Dad slept off and on in between choking episodes. He asked if I had made arrangements for a service... We had a steady stream of people stopping in to see him. Yesterday he wrote that he didn't think he would make it through the night. But he did. I am actually terrified...
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    My Dad

    Thank you everyone . Last night he looked completely... defeated. I'm not sure if that is really the right word or not but he looked different. A little more pale and sad and worn out. I was getting him set for the night and everything wears him out and he gasps for air- even on the trilogy. He...
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    My Dad

    So... I have only posted once after my dad was diagnosed last year. Since that time he and my mom moved in with me. (last July) He has a feeding tube and has been hospitalized 3 times with a variety of issues. He is on a trilogy ventilator with a noninvasive mask. He has lost all speech and has...
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    Hi Everyone- New here

    Wow Rebecca, our stories are so similar! We are still waiting on an appointment at the ALS treatment center clinic. I think he is going to need a feeding tube soon as he is losing weight and having difficulty eating. Rachel, I definitely want to start voice banking! I am super sad that I...
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    Hi Everyone- New here

    Thanks, everyone, for the welcome. I can't move on with them- I still have a middle schooler at home and kids in college that I am supporting. I've talked to my mom and I think they will both move in with me when the time is right. I want him to have his independence for as long as possible...
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