peg

  1. Gracious99

    O2 levels

    My husband's O2 levels were running at 85 when he had his PEG installed, they dropped to 75 last week when I called to admit him to hospice. At his last two hospice nurse visits, his O2 was at 95. The change seems strange as I figured the levels would continue to slide, but he has been using...
  2. azwxman

    REALLY Sinking In...

    So weak today...I was trying to just hold a tape measure up for my wife and my arms gave out after only seconds. Even with my walker I'm constantly at risk of giving out. Starting last night, the back half of my tongue just felt 'foreign'...like I no longer know how it's supposed to work. Had...
    • azwxman
    • Thread
    • back bipap breathing choking night peg pwc risk saliva swallowing tongue walker work
    • Replies: 17
    • Forum: People with ALS (PALS)
  3. M

    I wonder if there are windows in Heaven?

    hello.. My name is Katherine..My mother lost her battle with ALS in May of 2009. Here is our story. My mothers name was Susan :) She was a registered nurse for around 20 years. she was the type of person who made you feel warm and wanted by just being around her or in her care as a nurse. I am...
    • missMymom
    • Thread
    • ache als back children coping cry crying diagnosed eyes father food goodbye grace heart hope life pain peg story treatment wanted
    • Replies: 5
    • Forum: In memory of
  4. Gracious99

    PEG tube update + question

    Raymond did fine, all the discussions about oxygen and ALS really helped us today, I was able to be an informed advocate for him, and shared info with a couple of great nurses who hadn't dealt with ALS patients before, so a huge thank you! Now a practical question, what do we do with this tube...
  5. Gracious99

    PEG tube today

    My husband goes in today for his PEG, he has been quiet and silently anxious all morning. I know he doesn't really want the procedure, and he has a huge amount of anxiety about dying during the procedure, but he knows it's now or never because of his breathing decline. I guess I don't need any...
  6. tripete

    DPS - PEG Seurgon

    I had my visit this morning to discuss getting the DPS (Diaphragm Pacing System) installed. For those who do not know this is where they surgically place electrodes on your diaphragm to stimulate the muscle. Wires come out of the side of your stomach and attach to a small box that controls the...
    • tripete
    • Thread
    • als breathing decline diaphragm dps dps peg dying feeding feeding tube fvc mip muscle pacer peg rig risk surgery swallowing
    • Replies: 12
    • Forum: General discussion about ALS/MND
  7. P

    Peg and breathing issues

    Hello everyone. Just looking for some input. My mom ha bulbar ALS and can no longer eat by mouth so she is scheduled for a peg tube next Thursday. However, she is getting it against her ALS specialist advice. Her FVC is 45 and she is unable to breath while laying on her back. But she is so...
    • pastor
    • Thread
    • advice als back breathing breathing issues bulbar bulbar als fvc issues peg pulmonary function test surgery test
    • Replies: 6
    • Forum: General discussion about ALS/MND
  8. A

    Daily Routine

    Hello. My husband is in the end stages, can't do anything for himself, eats very little, no peg tube or vent etc. I was taking him out until about a month ago, I think he's too poorly for it now. I was curious as to what people's daily routines were at this stage. I usually get him up around 8...
  9. tripete

    Clinic Today 6-3-15

    Bad News; My seated FVC down to 68% from 85% my prone down to 48% from 67%, right hand strength and left leg down approx 25%, clinic visits moved from 3 months to two months. Concern about my neck and chewing. Good News; FVC now qualifies me for DPS (Diaphragm Pace making System), they did...
  10. A

    No Peg Tube or anything else.......

    Hello, My husband will not have a peg tube, won't use Cpap, trilogy, cough assist etc.. He can move his head a little from side to side but that's about all he can move, doesn't have much of a voice. He can still swallow fairly well so I have been feeding him a softish diet. The amount of food...
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