"50% oxygen" with hospital BiPAP?

[Kristina1]

Hoping our resident respiratory experts can answer this for me. Yesterday I unexpectedly went under anesthesia-- if I'd known in advance I would have brought my own bipap. When I woke up I requested bipap due to difficulty taking deep breaths after sedation. They set up a hospital bipap but completely ignored my assertions of my home settings, including the fact that though I told them I don't have O2 at home on my bipap, they insisted on 50% oxygen. I feel like Ive read on the forums that oxygen is NOT advised for PALS and could be problematic? Is what they did inadvisable in future?

 

[patrick123]

You are correct that using oxygen. But for short term use you should be ok. It's long term use you should worry about. It's not unusual to be put on oxygen after surgery. Sedation can make breathing more difficult.
Patrick

 

[Nikki J]

As long as they are monitoring you. But are you in UMass? Make them page the oncall for your neuro to ok it.

 

[Kristina1]

Yes I was at UMass but I'm home now.

 

[KimT]

I'm glad you are home now. In the future, you might want to carry information about your condition that requests they call your neuro before doing anything.

 

[Diane H]

Oxygen is only dangerous for ALS patients if they are not on BiPAP at the same time. See ALS Patient Care From Both Sides: Oxygen?

 

[lgelb]

I'm sorry you had a clueless team, Kristina.

Diane, while the risk of O2 is reduced w/ BiPAP, I'm sure you'd acknowledge it's non-zero. Kristina also mentioned that they changed her machine settings, making the O2 blend more problematic.

Semi-hijack -- even in hospitals with ALS clinics, the rest of the staff is generally clueless and there is generally no coordination with ALS clinic staff, who are likely unaware you are there unless you told them and are unlikely to be consulted. And even if they become aware, ALS folk may not be inclined or welcomed to dig in if they did not admit you. If you enter a hospital, presume nothing and birddog everything.

You have inspired me to update the emergency protocol summary we worked on earlier this year, to include the inpatient setting. Then I got ambitious and am trying to cut it to a page...stay tuned.

Best,
Laurie

 

[Kristina1]

It was frustrating because they could barely understand me (repeating 3-5 times, forced to use only key words). My phone, which has both a communication app and a list of my bipap settings, was not in the recovery room, and my husband was not allowed in with our kids who we didn't have time to find a babysitter for! I find when busy people like doctors can't understand me and maybe dont agree with what they did understand it's easy to get steamrolled. They were all really kind and respectful but it bothered me not to be able to communicate intelligently and be heard.

 

[affected]

How frightening it must have been to be in there and not be able to get your needs across!
How are you feeling now?

 

[Kristina1]

im home and feeling better now thanks tillie

How frightening it must have been to be in there and not be able to get your needs across!
How are you feeling now?

Thanks Tillie, im doing much better now after some rest!