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Thread: From Vent to Diaphragmatic Pacing System (DPS)...

  1. #161
    I could not be happier for you nancygail.

  2. #162
    So exciting nancygail!!! Keep it up...Dad has actually progressed to the point where he is breathing on his own entirely without a pacer (up to 16 hours so far in a row!). Still a major issue with talking (and trying to learn sip and puff and/or chin drive) but we're working on it. This despite some major setbacks (surgery not related to his injury). It does work!!

  3. #163
    Quote Originally Posted by One-of-a-kind View Post
    So exciting nancygail!!! Keep it up...Dad has actually progressed to the point where he is breathing on his own entirely without a pacer (up to 16 hours so far in a row!). Still a major issue with talking (and trying to learn sip and puff and/or chin drive) but we're working on it. This despite some major setbacks (surgery not related to his injury). It does work!!
    Good news from you and NancyGail both -- excellent!

    - Bill :-)
    Wheelchair users -- even high-level quads... WANNA BOWL?

    I'm a C1-2 with a legit 255 high bowling game.

  4. #164
    Senior Member
    Join Date
    May 2009
    Location
    portland oregon
    Posts
    128
    Doing well with my pacer.I'm off for 3 hours twice a day.With no trach !I just cover my stoma site with gauze and tape.Tuesday I go in to have my settings increased to 12 mA.

  5. #165
    That's great to hear nancygail, but why are you going without the trach? If the trach is out too long, the stoma can collapse so that you can't get the trach back in. Also, I think it's much easier to talk with the trach in, just plugged.

    For me, if I do get up to pacing 24/7, I plan to keep the trach as I use now or go to what's called a trach button. Suctioning through the trach is much better than by mouth and it's good to have a backup if something goes wrong with the pacer. Mine has had a short in it for the past four weeks and, due to insurance, it's taking a while to fix. Therefore, I've had to go back on the vent for a few times until we got the pacer working again.
    C2/3 quad since February 20, 1985.

  6. #166
    I've been told the same thing about never leaving the trach open for more than a few minutes lest it start to close. Those few minutes kind of creep me out too, not being able to speak or cough.

  7. #167
    Well, I haven't ever been told how quickly a trach stoma can close, but a GI doctor told me if we ever want to get rid of my g-tube (we kept it for convenience mostly; I get water & meds while I sleep, but it's also good for gastric burping and taking hard-to-swallow meds) to just take it out and put a bandage over the gastric stoma. He didn't even say to not eat or drink for a certain timeframe, which I took to mean it would close up pretty quickly.

    NancyGail, is there a benefit or reason you like having it out? Did your doctor say it was ok?

    Just curious.
    Wheelchair users -- even high-level quads... WANNA BOWL?

    I'm a C1-2 with a legit 255 high bowling game.

  8. #168
    I remember when hubby was at Craig and they removed his trach. They just put a piece of clear tape ver it and it closed in days.
    It amazed me a hole in your throat can heal so easily, but a spinal cord is ruined.
    Unfortunately he had to have it back within a few months. In his case, looking back I think it was a bit too optimistic removing it.
    We need it for suctioning and the vent at night or when he is tired. Espscially with the chronic atelectisis (sp) of one of his lower lobes.
    The same with the gtube twice, taped over and in a couple days closed.

  9. #169
    NancyGail, I wasn't trying to "reprimand" you when asking if your doctor approved of you having your trach out for 3 hours. I realize that those of us who need breathing assistance occasionally do things without asking our doctors (myself included). But this seems more important than some other choices we could make. I'm wondering if your doctor has a strong opinion. I'll try to remember to ask my ENT doctor about trach stomas the next time I see him.
    Wheelchair users -- even high-level quads... WANNA BOWL?

    I'm a C1-2 with a legit 255 high bowling game.

  10. #170
    A few years ago I was doing a lot of self-breathing practice and was doing fairly well with it. I did some while my trach was out as well, but not for very long. My doctor first approved me going without it for ten minutes at a time then, a few months later, he let me leave it out as long as I wanted, if it went in without problem.

    I believe the longest I went was about 30 minutes. It feels great to have it out, but it's not pleasant by any means when it doesn't go in well.
    C2/3 quad since February 20, 1985.

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