Wiggling Toes, C3-C4 Injury for Senior

[Joey_SF]

Hi KLD and others,

Re your kind query about the vent which my Dad is using -- the respiratory therapist has told me that for the home discharge, they will recommend the Respironics PLV-102.

Please let me know - is this a good model or should I ask for another one? should I ask for a "peep valve?"

I remember a discussion when the respiratory boss said that my Dad doesn't need PEEP and that they switched a PEEP-less machine which wouldn't alarm as much when my Dad used the PMV. I was concerned since one of the Docs claimed that with PEEP, a cough assist wasn't needed.

[SCI-Nurse]

The PLV-102 is sometimes used for home care, but is bulkier and harder to mount on a wheelchair than the LTV-950. The PLV-102 has also been discontinued, although service is available through 2014. The PLV-102 is a volume-cycled type ventilator, while the LTV-950 is a multi-mode ventilator.

PEEP does little or nothing to help with SECRETION management. It keeps the alveoli from collapsing, so can help with atalectasis, but it does nothing to loosen up secretions (the VEST or postural drainage/clapping is needed for this) or for getting secretions OUT (which requires the Cough-Assist or manual assisted coughing and/or suctioning).

You can find more information about many ventilators here:
http://www.ventusers.org/edu/HomeVentGuide.pdf

(KLD)

[Joey_SF]

Thanks - thus, should I ask for the LTV-950 with a PEEP valve?

[Joey_SF]

Hey Bill,

Sorry - but my Dad and I had a difficult time understanding the mini sit-ups but really want to know more about them.

I recently spoke with the diaphragm pacer rep who mentioned the term "frog breathing" and mentioned that it's easier to learn this with the pacer -- she described it with the caveat that it's easier to show than to verbally describe.

Just wondering, are you doing something similar or different?

Originally Posted by BillMiller823

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 :-)

[BillMiller823]

Joey,

The mini sit-up motion is simply using your head & neck muscles to try to pull your chin down to meet your chest (I don't come anywhere close). It's just trying to pull your chin down as much as possible. Doing so eventually gave me the strength to raise my chest -- with the same motion -- and take in air through the open trach.

Frog breathing... I don't do it, but I've seen it done. As best I could tell, people essentially use their mouth and tongue to "gulp" air -- at least, that's what it looked like to me. I do know that some people can do it effectively, but I don't know how long they can go. Candidly, it's hard to see how it would be effective for more than a few minutes. Perhaps I don't understand the process.

For a video demonstration of the mini sit-up motion, I actually just recorded a 6 minute video titled "Meet Bill Miller" for a school project (though I knew it could be useful elsewhere also) and posted it on YouTube:

http://www.youtube.com/watch?v=DiVonbXUWcU

I briefly show what I can do with my head and neck, including the mini sit-up motion.

God bless.

[trainman]

I do a version of frog breathing as well, but not by doing a sit-up version. I use my neck muscles and kind of swallow air I would say. When I was doing it regularly, I could go for around 5 hours at a time.

This video is old, but it shows how I do it. It was easiest for me to have my trach plugged, but that's not the case for everyone.

http://youtu.be/32tw8qR1ZQs