Trilogy help and questions

[scaredwifetx]

I know Laurie will be able to help on this one and thanks to anyone who can.

Steve is concerned that he is rebreathing his CO2 on the Trilogy because there is no exhalation valve or rebreather valve, just a mask with a six foot hose. He believes he is rebreathing his exhaled breath. He does not want to use his trilogy because of this.

He also suffers with sinus issues when laying down.

His breathing was checked at the study today and his breathing level has dropped to 60% which is almost a 20% drop in two months. He gets anxious and angry when I try to help and is determined that not having a valve is dangerous and that CO2 is dangerous.

The company who provides the Trilogy is useless and our contact knows nothing about ALS so he does not trust her.

 

[Nuts]

Matt's masks (he has a couple of different ones) each have holes in a connector through which his exhaled air exits. When his mask is on, do you feel air coming out (other than escaping around the seal)?

As for the sinus, does he have a humidifier on the Trilogy?

Becky

 

[scaredwifetx]

Asked Steve and he states his mask does not have any holes in it. He does use a humidifier. He is very angry about the CO2 and stated that he has enough health issues without getting CO2 poisoning. I admit I know nothing about this subject but am wondering why they are brining him mask's that don't release the CO2. He has several masks and states they don't have vents in them so either he doesn't see them or they are not there. I am going to quietly going to go check now.

 

[GregK]

They suggested the vent when I started having morning headaches and my serum CO2 went up.

The trilogy has cured BOTH of those problems.

It does NOT recirculate the CO2. It provides two levels of POSITIVE air pressure, the lower pressure allows exhalation.

 

[scaredwifetx]

Sorry everyone for wasting your time. My husband is hard headed and suffers with a little of the mental side of things. I should know better and checked for myself. i went and pulled each mask he has and they all have small holes for the air to escape.

Things are getting rough for him and he is declining each day so i need to pay more attention and learn more when i am not trying to hold down a job.

 

[lgelb]

Everyone has covered it. But concerns about CO2 are one reason why it's unwise, as some docs/RTs do, to automatically jack up the IPAP. As the muscles that facilitate breathing deteriorate, the lungs can't necessarily handle the pressure and so some of it can be retained. Some people have pre-existing diseases of the air cells as well.

Thinking about basics like how much you feel at war with the machine in terms of how fast/slow it delivers air, the time between breaths, how deep each breath is and how hard/easy it is to begin/exhale can provide cues as to settings that will work better with your particular disease.

Happy Wednesday (or Thursday),
Laurie

 

[Nuts]

It's tough when our PALS decide that the thing that will help them is doing harm (or is worthless). Certainly when cognition is affected this gets worse. What to do? Argue and try to help or let them have their way and accept the consequences? Allowing as much choice and control as possible is important, but is it still the thing to do when they have lost the ability to understand the consequences? I don't know the answer to this, except that it's not a fight we can win and it only makes things harder.

And you didn't waste our time. Mental exhaustion, emotional exhaustion, shoot, I think it's amazing that we all find our way home every day!

Becky

 

[scaredwifetx]

Thank you all so much and i finally proved my point and its settled at least for tonight. Becky, you made me laugh and that's a tough one today!

 

[affected]

Definitely when cognitive issues are present it's a constant battle for the smallest of things and so tiring!

I found the more I tried to lay something out logically, the more I just lost Chris as with FTD he couldn't follow the detail of logic!

So I had to keep things simple, and often accept that he was just adamant about something that was obviously not the case.

Good on you for solving it. I think it's made this another important thread because this is the day-to-day stuff we need to share xx

 

[GilWest]

Does the tubing have a swivel with holes on it? Mom is trached, but her tubing has a "Whisper Swivel" that prevents CO2 buildup...I think.

 

[scaredwifetx]

Thanks Gil. I went in the bedroom that night and got all the masks he has and found all the small holes. I then showed him and he still did not believe me so I put the masks on myself and showed him. He is now using the Trilogy again.

 

[affected]

So glad he is using it again!