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  • #31
    Percussion + Passey Muir

    1) My Dad has been transferred to a sub-acute - the head guy said that they don't do cough assist. My Dad misses the cough assist and has raspy breathing, esp at night.

    I downloaded the 'percussion' approach (since I remember that some of the ICU nurses were nice enough to do this to my Dad when they had extra time) -- but, I wonder how they could tilt my Dad -- is it okay to do it when my Dad is just plain horizontal?

    One of the docs said that the presence of "peep" on the vent means that my Dad doesn't need a cough assist. But, I remember that the vent in the previous specialty hospital also had "peep" and my Dad still wanted a cough assist. So, I kinda don't believe the doc.

    My Dad's vent was switched to another vent which is supposed to be better for speaking. But, the doc mentioned that this vent had no "peep."

    I'll try to suggest the Vest -- but, I'm worried since the docs are really peeved at my cough assist/pulmonary specialist requests and insist that they know what they're doing (this sub acute does not specialize in SCI but have a good rep for vent weaning).

    2) Good news: within 5 days, the new (sub-acute) speech therapist exceeded what the specialty hospital's speech therapists did in 2 months.

    I remember that my Dad told me that it's difficult to eat with the inflated cuff. This new speech therapist is getting my Dad accustomed to the PM (and I'm glad that he even was a bit exasperated about the professionalism of the specialty hospital) and having my Dad eat with the cuff deflated.

    My Dad was really jazzed and now, looks forward to mealtime.

    Ohhh... one of the nurses was kind enough to exceed the time of the PM (the speech therapist had set a limit of 30 minutes per meal). But, she left it on for about 2 hours - my Dad didn't try to talk but just got zen-like (it looked like he was just feeling the air flow).

    She tried to put it back on about a hour later so my Dad could eat more -- but my Dad got really uncomfortable and she quickly removed it. He seemed to get kinda unnerved about it.

    Do you need to build a tolerance for the PM? I thought that it's more comfortable so I was a bit worried when his face contorted.

    This new speech therapist's knowledge and approach is tons better than the speech persons at the specialty hospital -- but, I know that my Dad needs more detailed tips... the mundane step by step approach.

    Got any more tips on how to speak with the PM?

    I'd appreciate any info which you can give.

    Comment


    • #32
      It does take more effort to breathe through a Passey Muir valve, so if he is doing this off the vent, then he will fatigue more quickly. We always gradually build up time and frequency of using the Passey Muir for that reason. If he is off the vent for periods, then he could then also start to use a P-Flex or other diaphragm strengthening device as well. Because the cuff must be down for PM use, the ventilator settings usually also need to be changed when it is on, or the patient will not be getting enough air from the ventilator to compensate for this "leak".

      Glad he has a better speech pathologist. Deflating the cuff during meals does significantly increase his risk for aspiration though, so care must be taken to avoid this. Just having a trach increases his risks for this.

      PEEP is usually necessary but in small amounts for those with SCI. Can they not get a different ventilator, or one that can have a PEEP valve added? Which vent is he on right now?

      I would push the Cough-Assist (which can be rented for his use) and the Vest (also available for rental). The Vest can replace percussion (manual or mechanical) and be done more frequently and effectively to looses secretions; the Cough-Assist helps to get the secretions out. He can be put into all the necessary positions for postural drainage (combined with the Vest or manual cough) as long as the positions don't interfere with his breathing. Two different but related purposes. Manual assisted cough is a replacement for the Cough-Assist in a pinch, but takes skill and experience to do it correctly.

      If you have not already done so, please download this document and insist that his physicians managing his pulmonary care (and any respiratory therapists working with him) read it carefully:

      Respiratory Management Following Spinal Cord Injury


      (KLD)
      The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

      Comment


      • #33
        The CoughAssist is used briefly while the vent is detached, so I cannot fathom why anything related to the vent would affect the use of the CoughAssist. Other vent users may not agree, but to me, besides the vent itself, the CoughAssist is the most important part of my respiratory health. I haven't been suctioned since I left rehab over 14 years ago. We CoughAssist only. Details HERE.

        My best tip for becoming comfortable with a PMV is to actively exhale some air out your mouth and/or nose while the vent is giving you the breath. If you're talking quite a bit, that typically isn't necessary (because the "extra volume" will be used with speech) but when not talking, to "control your breathing" comfortably, exhale some with each breath.

        Regarding the immediate discomfort your Dad experienced when the nurse put the PMV back on -- like KLD said, the volume of the breath should be increased when the cuff is deflated, and similarly, decreased when the cuff is inflated. That's to ensure the lungs get adequate air when the cuff is deflated, because some air will be used for speech, and/or exhaled out the person's mouth or nose. That's true even when not using a PMV. At Shepherd Center where I rehabbed, my cuff-inflated volume was 800 cc, and cuff-deflated volume was 1100 cc.

        On a side note, I really dislike the term "leak" because when I was told the volume was increased to compensate for what would "leak" out my mouth and/or nose, that gave me the impression that I had no ability to prevent the "leak" -- NOT TRUE!

        Now, we're only talking about when the cuff is deflated and therefore when the volume is increased. In that situation, without a PMV, I can not allow any air out my mouth or nose, and force the entire exhale out the vent circuit's "exhale valve." With a PMV on, I can "hold my breath" and trip the high pressure alarm after a few vent cycles.

        This is a GREAT TIP TO HELP WITH "AIR HUNGER" -- I wish I had known it when I experienced air hunger. I can explain more if anyone is curious.

        God bless.
        Wheelchair users -- even high-level quads... WANNA BOWL?

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

        Comment


        • #34
          Thanks for the info -- the docs are really guarded.

          The speech therapist says that he's considering the cuffless trach for my Dad.

          Are there any risks?

          Comment


          • #35
            Everything has a risk, but KLD can probably share those much better than I can (I'd be somewhat speculating as a user, not sharing as a medical professional).

            That said, if your Dad can tolerate having his cuff deflated 24/7 for quite a while, that's probably the best way to test how it would work for your Dad. If a person can tolerate their cuff down 24/7 for a good while (I'd test it for a couple weeks at least, if not significantly longer) then I think going to a cuffless trach is a big plus. With me, it decreased my secretions, and also made trach changes MUCH easier.

            My granulation tissue would somehow adhere itself to the deflated plastic of the cuff, and my local pulmonologist would literally rip my trach out to change it. Without the cuff, the granulation tissue doesn't adhere to any part of my trach (I use a Shiley DCFS No. 8) and trach changes are easy enough that my nurses & caregivers do them here at home.

            God bless.
            Wheelchair users -- even high-level quads... WANNA BOWL?

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

            Comment


            • #36
              When his cuff is inflated, my Dad's setting is 35 on the vent. One of the nurses increased the oxygen to 40 when the cuff was deflated.

              Hmmm... it's often left at 40 for a few days since the nurse forgets to turn it back down.

              My Dad's "sats" are generally at 100-99-98... but, today, it dropped to about 91. One of the nurses said that the only important number was his oxygen "sats" and told me just to find her if my Dad's oxygen "sats" drop.

              Your increase seems to be much higher. Should the number be changed?

              Joey

              Comment


              • #37
                Will drop if suctioning needed, need to cough or clear airway.After trying that can give them bigger inspiration ( or ambu them )for a couple of breaths.If that doesn't put O2 sat back up then can increase oxygen if needed. Prevent getting mucuous plugs.
                CWO
                The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

                Comment


                • #38
                  Do the 35 and 40 pertain to oxygen or volume of breath?

                  I don't know about different vents and specifics and I'm not on oxygen, only room air.

                  I'm sharing my personal knowledge of my vent history and settings, but I cannot speculate on what would be appropriate for your Dad. His pulmonologist would probably know best, but not all pulmonologists are particularly familiar with ventilators. Hopefully his is.

                  Good luck and God bless.
                  Wheelchair users -- even high-level quads... WANNA BOWL?

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

                  Comment


                  • #39
                    Hi Bill,

                    Sadly, a pulmonologist has not examined my Dad - I've asked for this to happen, but the docs are saying that it's unnecessary.

                    Please explain "air hunger" and your tip... is it to hold your breath? My Dad would appreciate any tips.

                    Joey

                    Comment


                    • #40
                      Originally posted by Joey_SF View Post
                      Sadly, a pulmonologist has not examined my Dad - I've asked for this to happen, but the docs are saying that it's unnecessary.
                      You need to insist more forcefully. I would recommend you find one who will do the consultation and do it without their "permission". He has the right to consultant for what he needs, and the physicians cannot control that, although it may require you to private pay.

                      (KLD)
                      The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

                      Comment


                      • #41
                        Thanks for the advice.

                        I'm really sad cuz I was able to get a referral (via friend of a friend of a friend) to a specialist in their SCI unit. He was kind enough to send a PT who though claimed that my Dad wasn't "ready" to join their unit (3 hours of PT and more movement required), he offered to let his team do a Consult, work with the PTs in my Dad's sub-acute, and to have facilities available. He rec electro-stim (passive and functional) - but he warned that the docs had to approve.

                        However, the doctors refused (the director and his main doc who does not specialize in SCI) - claiming that the SCI unit did not have "privileges" and that this wouldn't benefit my Dad.

                        My Dad has been sleeping a lot - his feet are becoming swollen and he is cold a lot. He says that the sensations seem to be going away -- we haven't been exercising as much since he was moved to the sub-acute.

                        But, we started again.

                        Is it possible for the sensations to go away due to lack of exercise?

                        I double checked. His oxygen is supposed to be set at 30. One nurse turned it up to 40 when he had the PMV on - but since his "sats" are above 90, they are saying that there's no need to turn up the oxygen. But, my Dad feels uncomfortable when his "sats" are in the low 90's, since he is typically at 99-100.

                        Comment


                        • #42
                          IF normally in high 90's then he needs to be suctioned or something before putting on PMV. Especially if he is not feeling well wehn that low. Have they done cxr lately?
                          CWO
                          The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

                          Comment


                          • #43
                            Originally posted by Joey_SF View Post
                            Hi Bill,

                            Please explain "air hunger" and your tip... is it to hold your breath? My Dad would appreciate any tips.

                            Joey
                            Ok, this will be long, but hopefully helpful...

                            "Air Hunger"... in the hospital, one nurse told me "all vent users have air hunger." That was in response to my "complaint" that I didn't feel like I was getting enough air. She didn't elaborate and I'm not sure her statement is accurate.

                            Here's what I eventually figured out in hindsight... and hopefully an SCI-Nurse can correct me if I'm wrong:

                            I believe that in the beginning, when Shepherd was hopeful of weaning me from the vent, that they were purposely keeping me at a relatively low breath rate (BPM) and relatively low volume -- in hopes that my body would kick-in and supplement what the vent was giving me. They were giving me "just enough" breaths and volume to keep my O2 sats (oxygen saturation level) in the low 90s (I was told anything in the 90s is acceptable).

                            But they never told me that the reason I felt hungry for air was because they were trying to kick-start my body so I could hopefully wean. But eventually, after repeatedly stating that I wasn't comfortable and didn't feel like I was getting enough air, the pulmonologist in charge came in (and was exasperated) and basically said, "ok, we'll quit trying" and he increased my settings to comfortable levels.

                            I had no idea what he was talking about or why he was exasperated at the time, but I realized much later that he was hopeful of weaning me. My REAL COMPLAINT was that they never told me why they were keeping the settings low. If they had simply said, "Bill, we're keeping your settings low to try to get your body to kick-in so we can hopefully wean you" then I would have done my best to tough it out (I had the same hopes) and also I could have tried to breathe myself.

                            I later learned that in order to access your diaphragm and have spontaneous breathing -- though every SCI is different and weaning can be attempted at any level -- typically people need to either be C3 or lower, or be incomplete if higher than C3. I'm considered C1-2 complete.

                            Starting several months after rehab, I did learn to breathe by doing a mini "sit up" motion, i.e. pulling my chin down and chest up, which should be possible for anyone who can still access their neck muscles (I can, even as a C1-2 complete). Doing so, I worked hard, and eventually went from one minute 9 seconds (first attempt after working on the "sit ups" for a little while) to over 4 hours off the vent (breathing through the open trach). That is a nice safety net to have, but I have to be awake and actively breathing in order to do so.

                            That same "mini sit up" process allows me to initiate breaths with the vent, which is helpful for continuing speech when "running out" of air too quickly. More on this if desired.

                            After that background info... my "air hunger tips"... since deflating the cuff requires an increase in volume -- and YOU CAN PREVENT air from "leaking" out your mouth and nose (see my earlier post on my strong dislike of the term "leaking") -- then you should get a more satisfying breath if you do so, and here's why:

                            With the cuff deflated, the vent will give you a breath, and once your lungs are "full" any additional air given will be passively exhaled back out the vent circuit -- you should be able to hear the exhale valve "whistle" a bit. For example, without my PMV on, when given a breath, if I keep my mouth and nose shut (similar to holding your breath as an able-bodied person) then the full exhale will go out my vent circuit and the "whistle" will be relatively loud. If I actively exhale some air out my mouth or nose while the vent is giving me the breath, then there will be less volume exhaled out the vent circuit, and the "whistle" will be quieter.

                            So, if hungry for air, deflate the cuff for the extra volume, and keep your mouth and nose shut. That should be a more satisfying breath -- AND MORE SO when using a PMV (Passy Muir "speaking" Valve for anyone new to this conversation). A PMV is simply a one-way valve that let's air in easily as the vent gives the breath, but it COMPLETELY seals off the exhale direction -- which forces the user to exhale any extra air out his/her mouth or nose. With the PMV on, the exhale valve should not whistle at all, because nothing is going back out the vent circuit.

                            The PMV seals off so well, that I can actually "hold my breath" and after roughly three vent cycles, as it keeps trying to pump more air into me, the pressure will build up and I can actually trip the ventilator's high pressure alarm. Doing so makes me dizzy for a minute or so (so I don't do it often, and only when partially tilted back in my chair) but that shows how well the PMV closes off the exhale direction.

                            With a PMV on, I don't see how anyone could be air hungry, since the person controls how much and when to exhale. However, when first trying a PMV, "managing the air" can make the person dizzy. Again, my best advice for getting accustomed to a PMV, is to actively exhale air (out your mouth or nose) while the vent is giving you the breath. This can help you control your breathing and get comfortable. When talking, the "active exhale" isn't necessary, because you use air for speech.

                            And, for the record, the increased speaking ability is SO WORTH the effort to get accustomed to a PMV. It's the key to "near normal" speech when using a ventilator in my opinion. More if desired...

                            Ok, I've rambled enough on this stuff... God bless!

                            - Bill :-)
                            Last edited by BillMiller823; 02-13-2012, 02:46 AM.
                            Wheelchair users -- even high-level quads... WANNA BOWL?

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

                            Comment


                            • #44
                              1) Please elaborate on the "mini sit-up" -- do you lower your chin and try to raise your chest by "breathing?"

                              2) Yes - please elaborate on
                              "That same "mini sit up" process allows me to initiate breaths with the vent, which is helpful for continuing speech when "running out" of air too quickly. More on this if desired."

                              3) Oh dear... dumb question: what is a cxr?

                              Comment


                              • #45
                                CXR = chest X-ray

                                (KLD)
                                The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

                                Comment

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