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Dizmom

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Apr 13, 2015
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Reason
Lost a loved one
Diagnosis
08/2013
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US
State
il
City
Wheeling
All,
Not sure if you can help me with this but, in the last 3-4 days Pal has worn BiPap all day and night. Prior to that he was only wearing it when I could talk him in to it because his feet were purple due to lack of Oxygen. I asked him if he was having trouble breathing and he said no. I asked why he was asking for it. He said he just feels better with it on, like its some kind of instinct. ( he types on his computer with his feet). He can't really talk at all - it sounds like mumbo jumbo, hasn't eaten anything since Jan. All tube feed. Since the BiPap is a NIV, will he be able to go on like this, he refuses a ventilator, but isn't this a ventilator of sorts? Should I move in to his room in case he is in distress at night? Do PALs pass with the bipap on? Last FVC was 17 Dec of 15
:cry::confused:
 
Dizmom I'm sorry that this progression is hard to watch isn't it.

It seems he does need it all the time now as his breathing capacity is very low.
Yes this is a kind of ventilation, but it's called non-invasive because it is not delivered through a trach hole in the neck, which is invasive.

To answer your specific question - yes a PALS can pass with the bipap on. Because it is not invasive and is in bipap mode it cannot force him to breathe, just give a lot of assistance to breathing. Quite often a PALS will pass very peacefully with the bipap on.

As to whether you need to sleep in his room, I guess only you can decide, with his input if this will make either of you feel better. If it does, then for sure, do that!
 
Hi, DM, Tillie pretty much summed it up. It's pretty common to need BiPAP more and more, and more urgently. Since he hadn't been using it much before when he should have, he probably tipped over the point where he really needs it pretty quickly. It's kind of like a thermostat.

He could go on like this for days, weeks, months or years. At the least, I would install a monitor that will wake you up if he's in trouble. There are bedside alarms that he can trigger with his feet, also. Search on "switch activated alarm."

If he ever feels like the machine is not giving him enough air, too much or at the right times, let me know and we can adjust his settings, if you do not have an RT you trust. It's pretty common to need to adjust the settings as ALS progresses.

Best,
Laurie
 
Thanks Laurie,
This is all so hard. He told his hospice nurse he doesn't NEED his bipap he just feels better when he uses it Isn't that the same thing...? :) I guess it must be a power thing for him. The "need" means he is getting worse. His FVC in Oct 5 was 27, and 17 in Dec 5 . If we are linear in progress which he pretty much has been he is at around 10 now. Clinic said they don't need to see him unless he wants to go, which is jut to much for him. How low can a person survive on?
 
No one really knows the answer to that, since (1) the tests are not reflective of his sleeping environment/position and (2) most people, as we did, stop testing well before death.

So why not just do what you can with what you have, and never mind hypothetical expiration dates? Let him feel that much in control and just go on, getting the most out of each day. You will know when he is in distress, and that could be a time to call everyone...after you tell me, and we can try to adjust the settings. I would make sure that you have codeine on hand should he start coughing, and morphine in case he feels that he can't breathe apart from coughing. The hospice or clinic can write for those.

Best,
Laurie
 
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