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

  1. #71
    Just read the CoughAssist link...very different then how we are doing things but very useful...thanks again!!

    Tracey

  2. #72
    Hi Tracey,

    You said your Dad is on a large volume of breath on the vent?

    What is his volume, cuff-inflated and cuff-deflated?

    It's been a long time, but I believe my cuff-inflated volume was 700 cc and it was increased to either 1000 or 1100 cc when deflated during rehab. The increase is to account for what will be exhaled out the mouth and/or nose.

    My volume now stays at 1000 cc, and with the PMV on, when I'm NOT speaking, I actively exhale some air WHILE the vent is giving me a breath. I receive 13 BPM on SIMV mode (which allows for some breath-initiation, which can shorten the pause between breaths).

    Incidentally, the first goal is to tolerate the cuff being deflated for as long as possible (since it's required for speech), and if one can go with it deflated "permanently" then I highly recommend a cuffless-style trach. When I switched to a cuffless trach, my secretions decreased a noticeable amount and trach changes became MUCH easier.

    Why?

    Think of a deflated cuff like a plastic raft one would use in a swimming pool. Point being: even when deflated, there's still much plastic. And for some reason, I had granulation tissue that would adhere itself to the plastic cuff -- but not the plastic of the trach. My pulmonologist literally used to rip the trach from the granulation tissue when changing my trach. Nasty, bloody, and painful. Ironically, that's the only time we would inflate my cuff, until the bleeding stopped. But without the cuff, my granulation tissue doesn't adhere to my trach, and we now change my trach here at home, much more comfortably and easily, and without a bloody mess.

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

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

    Checkout the below CareCure thread about a new way to bowl!
    http://sci.rutgers.edu/forum/showthread.php?t=87066

  3. #73
    It's probably different for everyone, but I hated having a cuff with a fiery passion. I'm convinced they made my secretion levels much higher from the extra irritation, and like Bill, trach changes made me anxious for days in advance. Things got a lot easier with the combo of a pacer and a cuffless silver trach. Silver seems to be less irritating than plastic for me. Does your dad have trouble with aspiration? I believe that's one of the main rationales for a cuff.
    SCINet Clinical Trial Support Squad Member

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  4. #74
    Scaper1,

    What type of trach, specifically, do you have?

    And how often is it changed?

    Just curious. Thanks in advance.

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

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

    Checkout the below CareCure thread about a new way to bowl!
    http://sci.rutgers.edu/forum/showthread.php?t=87066

  5. #75
    Bill, I use a size 6 silver Jackson long, with a low-profile lock that was designed locally and is very hard to find. We change it every two weeks. I have 3 sets and just boil to sterilize.

    It took a long while to settle on a trach that made me, well, comfortable isn't the right word, but at least less uncomfortable. I really feel badly for your dad Tracey, he's so new to this and likely can't articulate or even identify specific sources of irritation. Some trachs curve a certain way that digs into the trachea wall or sets of one's gag reflex. The only way to know if there's a better option is to keep trying, which isn't easy, I know. Seating\ sleeping position also affect the way a trach tube sits. Or a twisted trach collar. Sometimes even a small adjustment helps.
    SCINet Clinical Trial Support Squad Member

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  6. #76
    When Dave switched from a Shiley to a Bivona he said it was like night and day, much more comfortable. For some reason the skin does not stick or grow on the Bivona, so does not hurt when we change it every 3-4 weeks.

    The ENT here would not downsize the Shiley from 8 to 6 because he said it was too small for the vent Dave uses at night. This ENT was such an ass, would not even finish the exam because Dave had a spasm.
    I am confused about inflated and deflated and cuffed etc too. We are relatively new at this. I only inflate for being on the vent at night.
    One of his vocal cords are paralyzed, but he has a pretty good voice with the PMV later in the day. He doesn't seem to have enough strength to use it early or days when he is tired.
    We are seeing an ENT tomorrow to look at granuloma that is growing quickly around the site.
    I started a thread on this and hope someone can tell me what to expect.
    Bill, your site is so helpful. I appreciate you,Scaper and Trainman.
    I feel like we are on a desert island with some of these things.
    People really take breathing, speaking and eating for granted.
    Last edited by LindaT; 02-24-2011 at 06:38 PM. Reason: spell

  7. #77
    Linda, I've never had granuloma, but from what I understand they just scrape it away a little. I used to get a some bleeding from one spot, but it went away on its own. I recently started using Vetericyn hydrogel for daily cleaning of the stoma - it works well to keep the trach site healthier and bug-free.
    SCINet Clinical Trial Support Squad Member

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  8. #78
    I had problems for nearly 2 years trying to speak, because of the type of trach I was using. Even with the PMV I couldn't get enough air out my mouth, because of the cuff in the way. I still like inflating the cuff at night so I don't snore. Finally I switched to a Bivona tight to shaft (TTS ) which made a night and day difference. I don't need to use the PMV anymore, because when the cuff is deflated you can't even tell that it's there, but you can still inflate it for night time.

    Just my two cents, hopefully it can help someone

  9. #79
    Wow. Thanks to all of you...great discussion! I will write more on Dad's particular condition and situation tomorrow but you've given me lots to think about and look into!

    Tracey

  10. #80
    Hi all....busy times...what is your experience of the bivona air cuff with talking port? Or just bivona in general. Less secretions? More comfortable?

    Thanks,

    Tracey

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