HELP...BiPAP

[helkat22]

Help. They now have a BiPAP in my mom's room. She's sooo short of breath and coughing non-stop. They wanted to bump her O2 up from 2L to 4L
They only put her on it if her O2 sats are low...like she was just at 92% and they don't think she needs it.
Is that how they should determine?

 

[Vincent]

O2 sats of 92% could just be a stuffy room, when it drops into the 80s then they start to worry. The bipap machine does help somewhat with sats, however the main reason to use it is PALS don't clear C02 efficiently. The test for that is Arterial blood gas. Try using the bipap without the O2 for 5-6 hours at night. Works wonders for overall well being. O2 can be harmful without flushing out the CO2. I don't know who is looking after your mom's treatment but I would try to get a respiratory therapist in ASAP.
Vincent

 

[lgelb]

Helga, that's ridiculous. She should be on BiPAP as much as she wants and can tolerate it. It's not a spa treatment. As Vincent says, bringing up sats is not the primary indication. Unless she has active lung disease like pneumonia, O2 is generally not indicated. Does she have a pulmonologist?

 

[helkat22]

Thanks! I didn't think 02 sat was a good measure.
She's at a hospital, so she is being followed by a hospitalist and a pulmonologist was consulted...but yesterday when I asked about when they are putting her on BiPAP the nurse said if her 02 sat is low. She was at 92% and the nurse said she was just going to increase her straight oxygen (via nasal cannula) from 2L to 4L. My head about spun and I said that 02 use above 2L is generally contraindicated in ALS pts because they can't expel enough CO2. They have no clue. It's like talking to a wall.

 

[Vincent]

Welcome to the world of rare diseases where doctors eyes glaze over leading to blank stares. If at all possible get the pulmonologist from the ALS clinic to look in on her.
Vincent

 

[helkat22]

Thanks, but there is no ALS clinic associated with the hospital where she is ��

 

[helkat22]

That was supposed to be a sad face

 

[Nikki J]

I doubt it will help but this is an authoritative link on what should be done
For acute, urgent and emergency care staff | MND Association

You could try showing it to everyone

 

[lgelb]

Your mom has the right, on your advice, to refuse O2, certainly the uptitration. And when they try to take the BiPAP off, I'd tell them no. What risk can they tell you it poses?

You could ask that they consult with an ALS expert in Philly (Penn or Hahnemann/Drexel) and you might even want to consider a transfer to one of those, if she is not getting the care she needs. Or Penn State in Hershey.

 

[Janis J]

I doubt it will help but this is an authoritative link on what should be done
For acute, urgent and emergency care staff | MND Association

You could try showing it to everyone

Thanks for that link, Nikki, I sure could have used it last week when my husband was in the hospital and on O2.

 

[tripete]

At my last clinic I asked for the MDA recommended hospital instruction sheet should I need to go to the hospital. They gave me a fold in half business card to keep in my wallet with instructions and doctor contact information. We should all ask our ALS doc for something to have with us.