Sip and Puff

[soonerwife]

My PALS is now having trouble breathing during the day as of the last two days.

Has anyone tried the Sip and Puff?

He has Bulbar Onset and his lips won't seal. Will that be a problem?

 

[lgelb]

If his lips won't seal enough to hold the mouthpiece long/well enough to get a breath, he would need to hold the mouthpiece in place for a breath with his hands, if he can do that. Or if he has enough head movement and can open his lips enough, he could sort of perch his lips on the mouthpiece and breathe, if the tubing is held stiffly in place (easy enough to rig).

If that's possible, buy a 22mm mouthpiece from a medical supply store and replace the mask with it -- you can hold it or tape it somewhere initially absent a more permanent mount, and you'll soon know if it will work. They come in slightly different shapes, too, and one may work better than another.

All that said, do we have reason to believe sip 'n' puff will actually help him breathe better? Is this more settings than needing a mouthpiece? Oh -- I see -- this is for hours when he hasn't been using the Trilogy. Never mind.

 

[soonerwife]

The RT said she would bring mouthpiece ventilation, what ever that means. Exactly Laurie, this will be for during the day. He has just started having shortness of breath during the day and doesn't want to use the Trilogy all the time.

 

[lgelb]

We mean the same thing. Her setup will be more fancy. In mine, you buy a plastic mouthpiece and stick it on the hose instead of the mask. A lower-cost option, unless you pay nothing for equipment.

I should have also noted that if you have a mouthpiece setup through whatever means, the backup rate and volume settings need to be off so all you have is IPAP/EPAP settings.

 

[soonerwife]

If it is a covered item, insurance pays 100%. We are at max out of pocket. The RT said she would have to make some adjustments to the machine to make it work.

 

[patrick123]

You can try flex tubing. I have seen a couple of pals using it for for sip and puff. Just google it , I tried posting a pic but I couldn't.
Patrick

 

[lgelb]

Yes, just a stiffer, shorter length of tubing to hold the mouthpiece upright. Easy to find. Again, if he switches between S&P and the mask, you will need to know how to adjust his settings for each.

 

[soonerwife]

Thanks Laurie! I was hoping for one button to push to change back and forth, guess not huh? The RT is on her way now, we will see how it goes. Dr prescribed lorazepam for the anxiety associated with the challenged breathing. I a hoping that will help as well.

 

[lgelb]

Actually, you can have her (or you can later) set up "dual prescriptions" -- one with the mouthpiece, one with the mask. So then it is easier to switch between them.

 

[soonerwife]

That's what she did. She set up primary and secondary so I just need to switch between the two. Much easier than what I was understanding. Thanks for all your help Laurie. Cliff decided against the trip... He says his traveling days are over. UGH!

 

[Nikki J]

I'm glad the process is easier than expected. Very sorry about the trip. Will he consider a shorter trip at sea level when he acclimates to the new Trilogy routine?

 

[soonerwife]

He says he is done traveling? Later in the month we are going to see Dwight Yoakam in concert. We will see how that goes. His C02 was 60 yesterday when the RT came. Not sure what # it goes to but I know they said they like it to be under 50. One day at a time...