O2 levels

[tmg16]

My Mom has been getting weaker and her breathing seems to be going fastest. She is on bipap 24/7 and seems relatively comfortable on it but when the nurse came the other day her O2 level was 93 - previously it had been above 95. She doesn't ever complain even when I ask. I know there is no predicting the progression but she has said several times that she hopes her lungs give out before her legs do. Is this the start of that? She is pretty weak all over but still able to get up herself and walk the short distance to the bathroom and back. Do the O2 levels just keep dropping and when should I worry about her being uncomfortable because I am not sure she will say?

 

[affected]

Sorry your mums condition is worsening.

The real problem will be CO2 building up, rather than O2 levels dropping.

Her bipap settings may need adjusting - do you know when that was last done?

If CO2 begins to build up she will get more and more sleepy and may develop headaches on waking up.

Do you go to clinic or are you on hospice to get some good advice from someone who is seeing her in the moment?

 

[tmg16]

She has always had headaches on waking. She is now napping in the afternoon also. I don't think we'll do anymore clinic appointments but she does have a hospice nurse out every 2 weeks. I'll ask my mom if she wants to try to adjust the bipap setting. I haven't worked with the bipap because my mom seemed to have a good handle on it and my sister has handled the respiratory therapist visits for the most part while I've done the clinic and home health visits.

 

[tmg16]

I've been worried about the CO2 buildup and asked the nurse about it but I think because my mom hasn't indicated that she's uncomfortable, the nurse didn't pursue it.

 

[affected]

I think this is where knowing your mum's end of life wishes become really important for how you talk with her and with the health professionals involved.

I'm glad you have hospice, though the nurse may not know a lot about how ALS works on breathing. Your mum should not wake with headaches on bipap, maybe she doesn't realise that is a symptom her RT should know about.

 

[lgelb]

When you say she has always had headaches on waking, does that mean pre-ALS as well?
Let me know if you want help adjusting the settings. A hospice nurse may not be up for that.

Best,
Laurie

 

[tmg16]

I would say she previously had caffeine related headaches. Now she has them pretty much all the time after waking (including naps). I am fairly certain there is CO2 retention, I guess I just assumed it was part of the deal. I may take you up on your offer Laurie, I'll check with my Mom tomorrow and see what her comfort level is with making adjustments. She seems pretty comfortable with the machine in general and has already made some adjustments on her own. My Mom has her paperwork in order as far as her wishes and in going into hospice had to even more clearly elect no treatment other than what they can do to make her comfortable at home. She has the g tube but opted for only the bipap and not invasive ventilation. She is just trying so hard to not be a bother that I worry she will not tell us when she heeds us or more medicine or whatever.

 

[tmg16]

So my Mom's headaches are getting quite a bit worse and she agreed to start morphine for the headaches and to ease her breathing. She was reluctant at first but after only 2 days is now at 3+ small doses a day. I think she was suffering from headaches way more than she let on. I know there is no way of really knowing and every PALS progresses differently, but I am starting to feel like this is end-stage and if anyone can give any guidance I'd really appreciate it. I spend about three days a week with my Mom but I am going to try and wrap up some work stuff and take more time to be with her. She can walk just a little bit and her arms and hands are so weak. She is having problems with a dry mouth because she can't swallow much at all. I've looked around a lot online to see what I can find about the signs of when CO2 retention is becoming fatal but haven't been able to find much. Her 02 level is still 93 but obviously the CO2 level is going up. What kind of O2 levels indicate that the CO2 level is becoming fatal? I'm not in a position to take a lot of time off from work but I do have 2 months saved up - I don't want to take them at the wrong time and then not be able to take them when I'm really needed.

 

[soonerwife]

Sorry to hear about your Mom, tmg. I have no idea when the C02 is really bad but our RT told us they like for it to be below 50.

 

[Diane H]

What kind of O2 levels indicate that the CO2 level is becoming fatal?

O2 levels do not reflect the CO2 level. A blood test or testing exhaled air can determine it.

 

[bkite]

Look up "breath stacking" on this forum. I just found about it and notice improvement in my breathing and swallowing after doing it for the past week.

 

[tmg16]

I ran across info on breath stacking a while back and forwarded it to my Mom. I'm not sure if she tried it but I think now she isn't strong enough.

 

[bkite]

Take up Laurie on the offer to optimize the ventilator settings, and breath stacking, like any new exercise, should start light and work into it.

 

[affected]

I'm so sorry we can't give the definitive answer you want. I truly know how you are feeling. I work for myself, and was juggling on reduced clients while looking after my husband, and could only really stop work completely for a short time period. I wanted desperately to know when his last month would be so that I could stop working for that time.

In hindsight I could have figured that last month, but at the time there was no way to know. We have Sue here who just went through what really looked like end stage, and then her husband rallied up again and that was weeks ago. I've known this to happen many times.

CO2 buildup causes respiratory acidosis. What you will see happening is: drowsiness, fatigue, confusion, shortness of the breath, headaches. To what degree each of these happens will vary.

Laurie can help you get the bipap optimal and that will help how your mum feels. The morphine will actually help her breathe a little better at low doses. Hospice should be able to help you titrate the morphine and may add something like ativan or clonazepam to help as well at some point.

But if she is taking in any food and fluids, this could go on for a while. Again I'm sorry we can't predict - if you knew how many incredibly different scenarios I have watched over the past 4 years you would have some idea. I still find myself totally surprised at how different every PALS can be. Hugs, this is really hard and you can only make choices with what you know right now.

 

[Narrowminded]

Tmg - Hi I'm Sue that Tillie referred to above. If there is one thing we cannot predict, it's the end. My PALS, my husband Brian, has had me thinking it was "the end" 4 times over the past 5 years. The first was a very bad bout of pneumonia. He had refused to go get checked out until he was in so much pain, the first thing the Doc's in the ER ask was if I wanted Pastoral Care. Well, he survived that. A couple of years later, another bout of pneumonia. Then after that we went in for stomach issue and he went septic because he had aspirated scrambled eggs. He was out for 3 days. That was Aug of 2015.

Just a month ago, he quit eating his HR was in the 140's and his BP was sky high and he was out of it for 5 days. Again, thought it was the end, started planning a memorial service because he was barely getting any fluids either except with the meds to keep him comfortable. Then bang he recovered He's eating again, and back to his pre-episode self.

I will note that he is on a vent and has been close to 7 years now (Aug will be 7). He has movement of one thumb and can blink and smile - that's it. He's been in his bed 24/7 for 2 years w/the exception of a ride to the hospital here and there. Due to the vent, that changes things in regards to his breathing a bit. With your mom not being on a vent, things will be different for her. However, Brian's o2 level can still drop on the vent and has, especially when he has pneumonia.

All this to day, there is no prediciting unfortunately. Definitely get help adjusting the bi-pap. It will make your Mom more comfortable.

Hugs as you work through this,

Sue