O2 levels

[Gracious99]

My husband's O2 levels were running at 85 when he had his PEG installed, they dropped to 75 last week when I called to admit him to hospice. At his last two hospice nurse visits, his O2 was at 95. The change seems strange as I figured the levels would continue to slide, but he has been using his trilogy during the day more, would that make such a difference?
Grace

 

[lgelb]

It might -- are you measuring both when he is using it and not? Also, a simple mucus plug can drop the level for days, and we've talked about the limitations of oximeters before, esp. in immobile people with atrophy.

 

[Gracious99]

I don't have an oximeter at home, I guess I was doing what I've read over and over here, looking or some way to measure the decline, :-/
Thanks Laurie

 

[Atsugi]

Grace, I also wanted some way to measure the decline in my PALS. I asked the docs to measure Blood Gas for Co2, but they refused. At this point they're only treating symptoms and they told me they wouldn't spend the money or time to put the PALS through another test.

 

[affected]

Don't go by a set of numbers Grace.

You can usually measure decline far more accurately yourselves just by how your PALS is.

So how is your PALS doing in himself?

 

[Gracious99]

Not great Tillie, all tube feedings now because of swallowing trouble, on the trilogy 80% of the time, had a really tough week last week, so I called in hospice for him. I am walking a thin edge emotionally right now, I have to go back to work Monday and I am distraught about it. I don't want to leave him, so I'm trying to arrange a part time leave so I can stay home at least three days a week. So much to do at work and at home and I feel like I need at least three more of me to get it all done.
I have a finite amount of available leave, so I'm looking for timelines so I can plan, but i know that's just not possible with this horrid disease, still trying though, sigh....

 

[affected]

The juggling is nearly impossible, and we feel torn between so many things that need our time and attention!

Magical world - we could just dump everything and be a full time carer. Real world that isn't so easy.

Do you have carers in with him while you are at work every day?

I was lucky that I mostly worked from home, so I was here. But that meant it was extremely difficult to get many hours of work done, let alone many good productive hours. Still I juggled furiously and always felt like I was dripping balls, but I did it somehow.

I kept thinking if I knew a timeline and knew how long he had I could work out to just stop work for a month if it was that close. But with this disease we never really know what that timeline is. So we juggle.

Hugs

 

[lgelb]

Grace, you can get a pulse oximeter at a drug store for <$20 and it might help shed some light on your question, but Tillie is right also that we more often go by how someone looks, feels, breathes.

Is your job one that you could do some at home?

 

[Drewsmom]

Is he still mobile? My pals O2 is decent when sitting. 91-92 when lying down, but they discovered when he stood and walked a few feet it plummeted.

 

[Janie H]

You shouldn't have to choose between you pals and your job, so sorry.
Janie

 

[Gracious99]

Thanks all for the replies, I went back to work today and found as I left the house I felt like I did when I was leaving my baby at daycare for the first time, lol! It was ok though, we both managed and he got some quality time with his son. I love my job and the people I work with were extremely supportive, more than wiling to pick up the slack for me, so I felt better about that too.
@Tillie, his adult son (he's 23) will take care of him the two days I work, and his other son who is 20 will fill in as needed.
@laurie, I'm a VP at an elementary school, so most of my job duties require my presence, but many tech related duties can be done from home. So I have arranged with my boss (who is an amazing person) to work only two days a week, take the rest in FML.
@drewsmom, he is not very mobile, still leaves his chair to walk a few steps to use the restroom, but that's it. Everytime his O2 has been measured he had been sitting in his chair.

Today is O2 was back down to 77, he's struggling with breathlessness, but not all the time, so I've started giving him a little morphine here and there to ease the discomfort.

Blessings to you all!
Grace

 

[affected]

Grace it looks like you have worked out a sustainable juggling act for now, well done!