Giving oxygen now

[Gracious99]

Raymond has had a turn for the worse, second day back and work and I got a frantic call from our son that Raymond woke up and was disoriented and confused, didn't know where he was or what was going on. I rushed home, called hospice nurse, and found that he was a little more lucid, but still struggling.

I stayed home, fed him, then put his trilogy on him to take a nap. Two hours later I could barely rouse him, he was grey, fingertips were blue, he was wide-eyed and jaw slack, he was sure he was dying and so was I. His O2 was in the 60s. Had hospice bring out oxygen for him, gathered the family, and put the trilogy on the bipap settings to move the air more forcefully. I also gave him about 20 minutes of O2, set at 2, which seemed to help him focus.

He rallied, kind of, by late evening he was giving me the lists of items for his kids, making sure I had all his last minute instructions down. He was afraid he wouldn't wake up in the morning.

Woke up at three panicked, needed morphine and Xanax to get back to sleep, 5 am tested his O2, levels were at 46, so I put the oxygen on him again this time for an hour. 8 o'clock, same thing, O2 at 44, so he's on the oxygen again.

I know he's retaining co2, I know that the oxygen makes that worse, but how much worse? I'm not sure if I'm helping him or hurting him with the O2. I feel like it's helping him stay lucid, I'm not sure, advice?
Grace

 

[Atsugi]

Grace, if he's lying down that makes it difficult for the muscles to pump the lungs. We kept my PALS sitting at an angle mostly upright so she could breathe while she slept.

You might want to keep him ventilated full time if he'll tolerate it.

Keep the morphine on hand to eliminate his fear of air hunger.

The problem with CO2 is that the brainstem reads the higher O2 level, then reduces the breathing frequency and depth of breathing. But, of course, the problem is not lack of oxygen, but raised C02 impacting the brain. Consequently, when oxygen is given, the brainstem relaxes and doesn't pump the respiratory muscles hard enough to expel the CO2.

Of course, it's possible that he doesn't have enough chest muscle left to breathe. Then he'll need forced ventilation or else increase the morphine to stave off the panic of air hunger.

Perhaps a nurse can come along and give some better advice. This is all I got.

--Mike

 

[Barbie]

Grace, you are doing all you can. comfort is the key for him. can the hospice give you any advice? what are they saying? do they think it is the end?

here with you holding your hand

 

[Atsugi]

Bump. This thread needs a nurse's input.

 

[affected]

Grace, it seems his breathing is declining severely and I think that you just need to concentrate on his comfort.

This is when giving O2 is not really a problem. He may slip away even with the bipap and O2 being given to him, because of the CO2 buildup. However, the awful symptoms of O2 deprivation mean that giving him O2 with his bipap will alleviate that along with the xanax and morphine. They may choose to switch to clonazepam drops as they work really fast to address the distress and anxiety. Don't be concerned as they titrate his meds up higher, they know the importance of comfort for him.

In my mind, whatever you do now is only aimed at comfort, not aimed at making him better or keeping him going longer.
As suggested he probably needs the bipap on all the time, and he will likely need less O2 if you do that. Also keeping him upright all the time if you aren't doing that is really important. As it is the muscles for breathing that are failing, the bipap will help, he may still pass away with the bipap running.

I'm so sorry, it's really tough, but if you can concentrate on his comfort, you will know you are doing some really important for him.

When he is lucid, attend to anything he wants done to feel that he can let go. He doesn't need to come to lucidity and be all worried about little details.

Huge hugs, please try and keep us updated.

 

[lgelb]

Agree that it would be very worthwhile to try the Trilogy full-time, if he still wants to go on, Grace. And it would be very common to use lower pressures on the machine during the day, with a nasal mask, for more comfort.

It can be very quickly that someone goes from not needing respiratory support during the day, to needing it all the time, just as one day you walk and the next you don't. That could easily account for the low sats/confusion/panic, if his muscles simply aren't up to the job of taking in enough O2 on their own any more. And needing BiPAP all the time is not the same as dying.

O2, as you know, is no substitute for helping the muscles w/ BiPAP and if there is a longer term, it would be best to try the BiPAP over pulsing O2 in and out.

But apart from trying that, whatever brings him comfort is, of course, the best thing.

Let us know how it goes...
--Laurie

 

[Gracious99]

My sweet Raymond lost his fight with ALS last night, July 30, 2015. He was surrounded by love; his family and friends gathered around him, I'm certain he could hear everyone as they laughed and shared stories about his crazy antics. I know he felt the love and joy and kindness that he brought to each of us while he lay peaceful and sleeping.
I had the privilege of keeping my promise to him; not to leave him alone, to hold his hand, to keep him comfortable and not in pain, and to be there for him as he left this world for a better space.
The hole in my heart is too large to describe, but I have a small measure of comfort that he is no longer suffering. I want to thank you, you have helped me make his last days comfortable with your advice and encouragement. Blessings to all of you and your families.
Grace

 

[Nikki J]

Please offer your condolences here
https://www.alsforums.com/forum/memoriam-memory/29688-raymond-has-passed-away.html