low oxygen levels

[sunandsea]

Hi All, Sorry for not being on more often. Life has become hectic - as it is for all of you - and I find it difficult to read and/or post much. But you are all in my thoughts daily.

I have a question because you continue to be my go-to source of information. I did a search and didn't find an answer but perhaps didn't look long and hard enough. If so, I'm sorry. Briefly, my husband's (PALS) oxygen level has been lower than his normal and this weekend, it isn't going up with bipap use. He's resting and it's 88, with the bipap on. (HIs normal is in the low 90s.) At what point, do I seek medical help? He's not on hospice yet - about to begin that - and he has a clinic appointment next week.

At what point is it urgent and even then, what is the course of treatment? I understand giving oxygen presents other problems with als.

Thanks so much for any input, advice.
Judy

 

[sunandsea]

It looks like oxygen levels are back to what is more my PALS' normal. Not sure why they dipped so low the last couple of days and what, if anything, can be done to help if it happens again.

 

[affected]

Hi Judy, hopefully Laurie will chime in as it may be that his settings needs adjusting?

 

[lgelb]

Hi, Judy,

If it happens again, you might try increasing the Ti if his backup rate is being triggered; slightly increasing the target volume if he thinks he's not getting enough air with each breath; decreasing cycle sensitivity if he thinks he's not getting enough time; increasing trigger sensitivity if his breathing slows or he thinks he isn't getting enough breaths per minute; decreasing EPAP if he thinks he's breathing against pressure and it's not already at minimum. And increasing AVAPS rate if the machine seems "behind" when adjusting to his need for air. There are other options but those are the most common.

Best,
Laurie

 

[sunandsea]

Thanks for the response and advice, Laurie. Unfortunately, H can't tell me what he thinks is the problem. He is now non-verbal and his ability to understand questions such as these is minimal. It makes our days challenging and situations like this even more concerning. His oxygen levels have been up and down today. I'll call the doctor tomorrow and also our respiratory therapist. Thanks again, I do appreciate it.

 

[lgelb]

Do you know how to look at the data on the machine while he's breathing? That would give you some insights, esp. when his sats are down.

 

[sunandsea]

Hi Laurie, Sorry to say I don't - have tried to understand them and don't. I want to spend some time researching and reading prior posts and info you have posted. It's been an overwhelming week. H was diagnosed with pneumonia and is on antibiotics and is doing much better. Started hospice and have conflicting feelings about it but hopeful. Just tired. Sad, Overwhelmed. More to share than time for and don't feel I should take the time to do that when so many others are dealing with same or more.
I don't want this to end and I don't want it to get worse. I keep reminding myself of the friends and family who have come through this week and how fortunate I am to have them. It just hurts so much.
Thanks for your replies, Laurie and Tillie.
Thoughts and prayers with all that are struggling out there. Sorry for the rambling...

 

[4tloml]

sunandsea, I don't have any wisdom for you, but sending good thoughts your way. It's always hard when things (like O2) change and we struggle to figure out why. And starting hospice seems to be a mixed bag--thankful for the help but also sad the progression has created the need for it. Even knowing others are going through it doesn't make it easier...although it does make us feel less alone in it. Glad you took the time to post. I'm sorry it's so tough right now.

 

[chally]

Thanks for your post. I am also dealing with low Oxygen and don't rally know what's up with this.
My pulmonologist explained to me some of what might cause it but I can't help but think he's grabbing at straws by opening other cans of worms. So I am with ya on this and sending good thoughts your way.
Love ya. Chally

 

[affected]

sunandsea we are behind ya - you ask for help if you need it and we will give, if you just need to vent we will listen, if you just need to say a little we are here too.

You find out that you just do your best with what the beast throws at you and there are no solid right or wrong choices.

I hope the antibiotics help relieve the pneumonia, that will certainly take the O2 levels down! xxxx

 

[sunandsea]

Thanks Tillie. And Chally and 4tloml. I do have a question for any/all - hospice is recommending oxygen for my husband to treat the low levels he is showing. Is it ever a recommended course of treatment with als? Our resp therapist came this past week and adjusted the trilogy and that helped. Unfortunately, the pulmonologist we were seeing through the als clinic left the practice and they haven't replaced him so there isn't one to consult. I'm going to call the neurologist on Monday. (oxygen was just recommended Friday night.) I voiced my concerns and the hospice folks listened but it has shaken my confidence in them. It was the nurse, not the doctor, that wants it. I was hoping hospice would be a help, now I'm worried that they don't know this disease (they claim they do and have other als patients and they were recommended). So - back to my original question - is oxygen ever given to an als patient? Thanks.

 

[affected]

Hospice are used to dealing with O2, but not with ALS.

I know you are already worn out but hopefully it's an opportunity to help teach them. O2 is not a therapy for ALS. It may be added in small levels through a bipap if an ALS-experienced pulmnologist prescribes.

They are probably great with everything else, don't let this turn you too much, but stand your ground that they are not qualified to prescribe O2.

 

[lgelb]

As Tillie says, O2 most often will worsen CO2 retention, and a hospice that is used to dealing with COPD/CHF/cancer likely is not thinking that way. There is probably an agency guideline that the nurse is falling back on.

But if his pneumonia is driving the low O2 levels, there could be a place for low-flow short-term, if/as an ALS-experienced pulmonologist manages it.

 

[sunandsea]

Sitting here and thinking about how much has changed in the last couple of weeks. Rereading old posts on the oxygen question and learning a lot. H is comfortable but sleeping a lot and not eating as much as his normal. Is this the beginning of the end? I often feel like I'm constantly looking for that and just want to be with him when it's time and do what I should be doing. I thought I would be calling hospice in times like this but he's comfortable and they will probably say to give the oxygen - I don't want a debate, I want support.
Thanks for listening.

 

[soonerwife]

I know how you feel. It seems like we are very close to the same place, sleeping more, eating less. I wonder if this is the beginning of the end as well.