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02 or no 02?!

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NinjaLady

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my PALS this morning is struggling to breathe, 02 sats are bouncing around 81-88 all morning and he looks uncomfortable. Gave him an Ativan and morphine but doesn't seem to be making him comfortable. I wouldn't say agitated, just uncomfortable. The RT is suggesting some 02 for comfort and I'm a bit torn based on all the posts on here about no 02 for our PALS, etc. He doesn't have a bipap and hasn't felt he needed one (until probably now) and we are about 3yrs into this since onset. I don't know what to do...looking for advice please and thank you.
 

Nikki J

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Oxygen is generally very dangerous for PALS and frankly could kill him. If this is an acute episode with sudden onset and he is not ready to go he should be evaluated to see what is causing this

Oxygen in PALS should be used in 2 situations. First for treatment of a known issue with careful monitoring of CO2 and almost always bipap and 2 for comfort at the very end where there is air hunger not managed by other means and in full understanding that it could speed the end

Sorry to be brutal
 

affected

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Exactly what Nikki said - if he is only wanting comfort care and no intervention then the O2 will help give him a peaceful passing. Otherwise it is very dangerous.
 

NinjaLady

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Its okay to be brutal, I appreciate the honesty and info.

What could be causing the drop in sats other than progression?
 

affected

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Chest infection or pneumonia can cause this, which are secondary to ALS, usually caused by aspiration.
 

lgelb

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So he does not want to consider BiPAP? In that case, O2 will likely shorten his life but make it more comfortable in the right amount. You may want to discuss with him whether he wants to be evaluated for an infection, because respiratory support will be recommended, and if he doesn't want it...

Best,
Laurie
 

Nikki J

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Collapsed lung ,blood clot...There are a number of things and again it depends on his wishes how you proceed. Good luck
 

NinjaLady

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He was checked out yesterday by a dr and nurse and lungs were clear, no sign of infection, vitals were fine, etc.
 

NinjaLady

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They told me he is only using around 300ml of lung volume and no sounds at the bottom at all, etc.
 

NinjaLady

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Would starting a BiPap now even be helpful/comforting this far in or would drugs be more comforting. The BiPap intake process here is 3-4 days in ICU for intro and monitoring which will be very stressful for my PALS. I just want to know that it will be worth it for him. Waiting to hear back from the Clinic on their opinion.

thanks again for the feedback
 

Nikki J

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It really depends on where he is clinically and what his goals may be. 4 days in icu is tough and is not how it would be done here do you have a doctor or nurse who has evaluated him recently and knows ALS that you trust?

If it is pure comfort and the end is near he can be medicated and even receive oxygen if that is what is needed to pass peacefully.

But if you are further out and he wants to and the doctor and nurse think it can buy him time he wants that is different.

There is also another path though. I thought this was sudden? If he went from normal sats to 80 overnight then there may be something to treat that could put him back close to where he was yesterday. Ask if this scenario fits what the clinicians see
 

NinjaLady

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RT is coming out soon and I will ask. He also just (this past hour) is showing a weird reddish spotty (not bumps) rash on his face only. No fever.

I just asked him again (for the dozen+ time) about biPap and although he isn't vocal today (eyes mostly closed) but I made it visually explicit for his answer he just said he is now wanting biPap. I'm shocked. I will make the calls. The 3-4 ICU stay will be interesting and likely brutal.

I asked him if he wants to just be comfortable and the O2 on its own may speed up the end for him...or try bipap and see if he feels better/do you want to continue and fight and he wants to live/prolong things. I'm pleasantly surprised, I thought he would have said otherwise.
 

NinjaLady

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He is also doing this weird new grunting noise with each breath. Probably just the vocal chords but still unnerving.
 

lgelb

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I would push back on this ICU intro -- not needed, an invitation for a hospital-acquired infection, etc. esp. since he sounds frail. Phrase it with risk management, home intro costs the government less, etc.

BiPAP would help him use what he has, rest the muscles, etc. and if needed you could perhaps pay for extra RT visits. If he is decompensating, it may be too late for BiPAP to do too much, but it is hard to know that from afar. Supporting even shallow breathing can be very helpful. If he wants to go on, I would try to support that wish on his terms.

Agree, if sats dropped suddenly and a lot, if nothing else, would put on BiPAP and see what happens with the sats.
 

NinjaLady

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I have pushed back on the ICU intro and was advised by multiple depts that however inconvenient/this is their mandate policy, etc.

What do you mean by decompensating?

I will always support whatever he wants to do/not do. These are his choices, not mine.
 
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