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    #61
    Sorry to hear about your dad, but is his vent use due to SCI? Right now, the system I use is only FDA approved for individuals with SCI.
    C2/3 quad since February 20, 1985.

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      #62
      Dps

      We're in Canada and it was approved by Health Canada for diaphragm dysfunction (similar to FDA). His situation is quite unique in that he has a stroke but is functionally a spinal cord injury due to the location of the stroke. His accident years back dissected out his blood supply to his spinal cord/lower brain stem but we weren't told that at the time.

      He is currently pacing 3 -4 times a day, 45minutes to 1 hour, but I think it might be uncomfortable or difficult as he really doesn't like to do it, but I'm not sure why.

      What was your experience? Is it uncomfortable?

      Tracey

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        #63
        Dps

        He actually has a DPS, implanted in July 2010 (Dr. Onders came up to Kelowna, BC, Canada to train the surgeons here). The difficulty is Dad is limited in communication ability (that's another post) and doesn't seem to like the pacing but I can't figure out why. Thought if I could get some idea about others experience I might be able to better help him.

        Thanks!

        Tracey

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          #64
          Hi Tracey, I understand your frustration that your father can't speak. My husband has gone several months straight (in the past) with no voice and some days is not able to wear his speaking valve.
          It was hard on him emotionally and he sometimes just closed into himself. He hated the letter board.
          I can't answer your question, but understand how hard this is for a family.
          Last edited by LindaT; 20 Feb 2011, 9:28 PM. Reason: clarify

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            #65
            It is fairly uncomfortable at first, especially the switching back and forth from a positive pressure system like a vent to the negative pressure of muscle contraction. I have an older pacer style, so I'm not sure if this applies, but once a year it gets checked to make sure that the absolute minimum of current necessary is being used to stimulate the muscles. That makes for the smoothest and least jarring contraction. Have they tried adjusting the settings at all? How is his oxygen saturation on the pacer compared to the vent? What about volumes?

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              #66
              I can't say I experience any discomfort, at least not since it was set. Getting the rate set at first was uncomfortable, my muscle reacted pretty badly to the stimulation and my lungs hurt. After we got everything set to my comfort level though, it was fine.

              Using pacing vs. vent is very different, one you're breathing 'normal' and the other you're just getting air pushed in. For me, going back and forth isn't a problem or something I really notice. With a cuffed trach, I would see it being uncomfortable.

              Having air pulled in via trach would cause the balloon and throat to be pulled on. This would likely hurt and not be a good experience. For your dad, I would concentrate on the need for the cuff first, getting it deflated and allow speech. The pacer would come well after that in my opinion.
              C2/3 quad since February 20, 1985.

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                #67
                Thanks for the great feedback! Dad not speaking is his greatest challenge and one we hope to start to address in the next few weeks. When in hospital it was drilled into his head that if the cuff came down he'd get a pneumonia and die if the cuff came down. Not true, but problematic. Dad does have a fair bit of secretions and requires significant amounts of suctioning (sometimes 60+ passes a day) and cough assisting. If not managed effectively he will desat into the mid 80s and he is monitored continuously. His secretion volume is about 100 -200mL but I've no way of knowing if that is excessive or not (and nor do any of the doctors!). We also suspect that he had a lesion under the last trach cuff as we downsized to a shiley 6 from a portex suctionaid 8 and now have bleeding and cuff down was very uncomfortable for Dad (from in the airway not granulomas around the site). We are going to try botox again to see if we can reduce the oral secretions then try taking the cuff down.

                Can anyone share some tips on talking? Dad has had great difficulty the few times we've tried despite high volumes and rate-a word here and there, very croaky. We're hoping the smaller trach helps . He can also control his diaphragm a bit as he breathes over the pacer and the vent all the time.

                In reality all this should have been done in ICU but there was no desire to do so and we felt it best to try in a more supportive home environment.

                Thanks again for all your help.

                Tracey

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                  #68
                  Thank you!!

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                    #69
                    Hi Tracey,

                    Sorry for the delay replying.

                    Does your Dad have a speaking valve (e.g. Passy Muir Valve = PMV)?

                    IMO, it's the biggest help for speaking on a vent, and it can be used with the DPS also.

                    Tips wise, ask your Dad to try "humming" (i.e. vibrate his throat, like saying "mmmmmmmmmm") when the cuff is deflated and he's receiving a breath. That's a good way to kind of "warm up" one's voice and get ready to talk. See how long he can sustain the "hum" and also try counting quickly, "1-2-3..." etc. just to try to increase his ability to use the time that he has air surrounding his vocal chords. The PMV increases that time.

                    I've never heard of the inflated cuff being so critical to survival [EDIT: at least not once someone is stable, especially post rehab, etc] but I'm not a doctor, nor am I familiar with your Dad's precise situation. That said, my cuff was deflated permanently within a short time of coming home from rehab 13.5 years ago, and since we never inflated it, I eventually got a cuffless style trach (I've used a Shiley DCFS No. 8 for probably 10+ years now).

                    The key to not getting pneumonia (IMO) is to not let secretions stay in him long enough to become problematic (i.e. grow bugs) and the CoughAssist is a HUGE reason why I believe that I've been able to avoid such respiratory infections. I wrote in-depth about exactly how we use the CoughAssist on my website here:

                    http://www.lookmomnohands.net/Life_with_an_SCI.htm

                    There are many knowledgeable people on here, so please write back with any questions.

                    God bless! :-)

                    Bill Miller
                    Last edited by BillMiller823; 24 Feb 2011, 1:29 AM. Reason: Clarify inflated cuff statement
                    Wheelchair users -- even high-level quads... WANNA BOWL?

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

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                      #70
                      Hi Bill,

                      Thanks for the advice! The cuff is a big issue, but we're working on it. Dad does have a Cough-Assist machine and it works wonders. How do you use it with a cuffless trach? With Dad we use it on his trach with oxygen and then suction out his secretions through the trach (in conjuction with exhalation mode on the machine) with a sterile in-line suction setup. Unfortunately he needs it A LOT and we are working on that issue regarding his secretions. Personally I believe when the cuff is down he'll evaporate some of the secretions and will have less aggravation from the trach that may be contributing to the problem, but we'll see.

                      We do have a PMV, but again it has been difficult as the cuff down was very uncomfortable and he really had no ability to vocalize (a word or two at best) which was frustrating. We downsize the trach to a 6 and are waiting for botox to manage the secretions. Hopefully we'll be able to try again in the next few weeks so I am sure I will have more questions for you!

                      Tracey

                      We are currently trying to get a portable machine from Italy...anyone have any experience with the Pegaso (and how did you get in the country?)

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

                        Tracey

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                          #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.

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                            #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.

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                              #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.

                              Comment


                                #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.

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