First visit to a Pulmonologist in a few days

[Tomswife]

If Tom doesn't tolerate the mask is there another device that is not a mask that would provide comfort. Aide told me there is a non mask device. He doesn't want oxygen.

 

[Mary2]

I don't know what would be considered a non-mask. There are many options. There are nose pieces that just go in the nose and PALS has a cloth mask that just goes over his nose.

 

[Mary2]

PALS uses the Circadiance Sleepweaver 3D. This can be googled. We get one mask to last about 2 weeks and the RT company sends us 2 masks a month. But there are other options as well.

 

[affected]

Giving O2 is dangerous for a PALS. Sometimes it is given WITH the trilogy in special cases, usually with other pre-existing lung issues. Giving O2 in the usual palliative way will likely hasten death. PALS don't have so much a problem with not getting enough O2, they have a problem with expelling CO2. Hence the need for Bipap instead of CPap.

There is a sip and puff option. And there are many variations on types of masks to try out.

 

[Tomswife]

Tom's arterial blood gas. They did not find carbon dioxide retention. Dr. Said it was unusual.

 

[affected]

it is very unusual! They would still not give him O2. It is good to have these baselines done so you know that CO2 is not the issue with the behaviour things you have been reporting of him being vague and dispassionate. It leads to it being more likely a brain thing.

 

[lgelb]

Or fatigue due to the greater work of breathing/energy expenditure that needing and not having a BiPAP entails.

 

[lgelb]

By "sip 'n' puff," we mean a 15mm plastic mouthpiece, kind of like the last piece on a diving mask, that attaches to the hose, where he could take a breath whenever needed but has nothing on his head full time. It is somewhat more tiring to use so it might not be the best thing all day, but you can do some of each.

Using velcro, zip ties, bungees, etc. you can mount the hose where it's easiest to reach.

There are straight and angled mouthpieces -- I'd try one of each. They're cheap.

As for a mask, look at cpap.com; there are more minimalist nasal masks than there used to be and many have free return insurance.

 

[affected]

yes good point Laurie - fatigue and a higher metabolic rate can play a bit part even before CO2 starts building up.

 

[MJT]

Kathy, I hoped that Tom's engagement and mood would improve with BiPAP use. I'll be thinking of you today. Hugs.

 

[Tomswife]

I am sorry I dont understand the air we breathe and take for granted with each breath.
How does wearing a Bipap increase the co2.

Tom's bipap just arrived. I am afraid to use it.

 

[lgelb]

Using a BiPAP decreases CO2 by supporting the exchange of O2 as we breathe in, to CO2 that we breathe out. If you hold your breath for a while, you will feel the effects of not exhaling CO2. By supporting each breath, the BiPAP helps prevent getting CO2 stuck, basically.

I will PM you about the BiPAP.

 

[Doing My Best]

Did the DME provider not have someone train you on using the bipap? It's not hard, but I would have been intimidated without being shown how. Thank goodness for Laurie, for those of us in this forum.

The way the purpose was explained to me was that enough oxygen is being received on the inhale, but PALS' diaphragm is too weak to do a full exhale, so CO2 builds up instead of being expelled. Which is exactly what Laurie has already said, but I offer it just in case another way of putting it is helpful.

 

[affected]

Definitely using bipap DECREASES CO2 buildup which is why we use it. CPap can increase it and using O2 alone definitely can increase it as the PALS breaths even less deeply with the extra O2 so available.

 

[lgelb]

Thank you for the kind words. I think some of the confusion comes from the reality that at the end of life, the BiPAP (presuming there is no trach) is no longer enough to prevent CO2 buildup. Sometimes it is not enough to get enough O2 in, either, which is why O2 is occasionally used palliatively at the very end.

It is the difference between IPAP and EPAP, that is constantly adjusting breath to breath within our preset parameters to move just enough air volume, with the right timing, that postpones that day, with the right machine, settings, and mask.