Sip and Puffs

[starente15]

Hi everyone. Does anyone use a sip and puff vent? I'm trying to find out if there's a point in time when something like that wouldn't work. My father has difficulty speaking in sentences at this point and is short of breath all the time, worse upon exertion of any kind. Would something like this even work or is a bipap necessary? He currently uses the Trilogy at night and several times during the day but I keep searching fruitlessly for something more 'portable'. TIA!

 

[DreamsEnd]

I may be off base, but our new Trilogy is portable and is also a bipap and external vent. Dad's doctor would prescribe the settings for the spin puff, bipap and vent. Sounds like he needs more breathing assistance at this point and the bipap at least at night might be recommended. The co2 builds up in the lungs of many PALS as their diaphragms get weaker and the bipap helps.

Please see the doc as soon as you can
Sherry

 

[starente15]

Thanks Dreams. Forgot to mention he does use it at night and has now started using it more during the day. So the sip and puff is an option that can be set? Is that correct?

 

[affected]

zoohouse's husband uses sip and puff.

But really your dad needs to speak to his pulmonologist to keep his bipap settings working at the best effect for him.

I'm not sure if sip and puff will make it more 'portable' or exactly what you mean by this? The trilogy is portable as Sherry suggests. The non-invasive vent will assist your dad to a certain degree but his breathing muscles sadly will continue to weaken and give out.

He may need to use the bipap nearly all the time, and to conserve energy as much as he can. I know this is hard to watch and adapt to, and he has a very rapid progression. It's wonderful that you are able to put so much energy into constantly researching for him to find the best ways to keep him comfortable.

 

[starente15]

I guess by portable i'm thinking of him being able to wheel the trilogy around the house to other rooms and then sip/puff on the tube vs. wearing the full mask. He is still fully mobile but even walking short distances at this point is causing a lot of exertion and breathlessness.

 

[affected]

OK, hopefully Paulette (zoohouse) will look in and may give some information.

I think that he needs to consider being wheeled in the house a lot of the time if it is causing the breathing distress. This is what I mean about conserving energy. His legs may be still working, but every time he causes breathing to be laboured he is overtaxing his breathing muscles and risking making them fail even faster.

It's the same principal as if it were the leg or arm muscles failing. Overuse = small microtears and damage that enhances muscle failure.

Now, if he insists that he would rather walk and wear himself out you may have to accept this. Some PALS would rather hasten progression to have some independence.

 

[lgelb]

With a 15mm angled plastic mouthpiece placed inside the end of the Trilogy hose, it is substantively sip and puff. That's what zoohouse (Paulette) and Tim are using in the shower. You don't need a special tube to try out the idea, but if he likes it, you can get rigid tubing. The point at which sip and puff won't work is 1) your dad feels too weak to draw on the tube or mouthpiece or can't form a seal with his mouth or 2) needs full-time air coming in.

S&P can be set up for chair or ambulatory use. If your dad is having difficulty breathing because he's walking around without any support, the solution you describe may work for a while. As Tillie says, he shouldn't be laboring whatever setup he's on. If walking/puffing doesn't work out, I recommend the Circadiance Sleepweaver mask as less invasive than some others.

 

[starente15]

Thanks a bunch lgelb!

 

[Diane H]

The possibility that people may want to use their Trilogy while walking doesn't seem to have occurred to Respironics. Probably just as well since anything they came up with would be sold as medical equipment and be grossly over-priced!

I think that putting the Trilogy on a walker or small collapsible shopping cart would work. The trick would be guiding the Trilogy hose up to be in reach for sip/puff. A simple pole would work but wouldn't necessarily get the tubing in easy reach. And I would worry about being impaled in the event of a fall! ("You'll put your eye out!" said Ralphie's mother.)

I use Loc-Line Modular Hose system to hold a long piece of plastic tubing as a drinking straw. It works perfectly to position the straw exactly where I need it and is easily bent by hand to adjust it. I think that Loc-Line would work great for guiding the Trilogy hose up to your mouth.

They don't sell from their website but have several online distributers, including Amazon.

The stiff but bendable hose comes in 4 diameters but all are strong and rigid after you shape them to fit your height and flex needs. The loc-line tubing comes in packs of short lengths. You won't need any of the orange couplers or adapters so buy just hose in small segments or a 5 foot length. To connect the short segments you will need the special pliers as well.

When your tubing arrives, find a way to mount it to the walker/cart. Connect sections of the loc-line to get the height you need. You can remove individual nodes to adjust the height. Finally run the Trilogy hose along outside the loc-line and use tape or tie wraps to hold it on. Now the loc-line can be used when standing or bent to position the Trilogy hose when sitting down. If the Loc-Line gets too "whippy" at that length, you could drop a length of narrow diameter wooden dowling through it to stabilize the lower part. In the event of a fall the Loc-Line will flex.

Anybody willing to try this?

 

[starente15]

The doctor approved and will order whatever we need but my dad didn't want it. He said he'll sit with the mask if he needs it. Oh well. At least we know if he changes his mind we can do it.