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ECpara

Senior member
Joined
Jan 7, 2012
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605
Reason
Lost a loved one
Diagnosis
02/2012
Country
US
State
GA
City
Thomasville
Tom is miserable. He wants to throw up but really can't. Vomiting needs the diaphragm, his is severely compromised. The mucous he suctions (and what he does throw up) I think is tinged with blood, it's dark in any case. He has NO fever at all. I was thinking pneumonia. But does pneumonia make you nauseous? His oxygen is teetering between 90 and 92, pretty normal for him. I called his primary, he has him on an anti-nausea medicine but it's not working. I want to take him to the ER, he does not. That's another whole can of worms, do we allow oxygen? He can't lie down (at all). What do I do....follow my instincts and take him, or let him wait till morning? This started last night, I'm just noticing the tinge of blood (I think) now. What do you all think?
 
Well yes pneumonia could cause nausea. It could be anything. In general I say follow your instinct but what is your ED like? how much of a nightmare especially Friday night? If you wait what is available on Saturday for you?
So sorry
 
Larry had those sx w/o pneumonia, more than once. Could be blood from irritation or dried food. If his O2/BP/pulse are not wacky, probably he doesn't have a major bleed or blockage.

Don't know what anti-nausea med he is using but Larry had some success w/ ondansetron fast-melts. Hydration and salt, in this weather especially, are good, too. Has he tried sucking on something w/ sugar, like a lozenge, or a popsicle...you could make an Icee...try to stay away from dairy. I would also try alternating positions in the wheelchair or bed so try to burp out some air.

As for the ER, miserable is one thing, moribund is another. If he is with it, he knows the difference.
 
How awful. Hydration is really important.

I know Tom is bulbar so he can't suck on anything.

Did you end up taking him anywhere? How is he doing?
 
I had a nurse CALS friend come last night, she's very familiar with all aspects of ALS, pneumonia, etc (her husband's been on a vent since 2010). No pneumonia, lungs sounded clear. I failed to mention that Tom had his radiation procedure on his salivary glands Thursday....she feels that the blood was just irritation from that, not a significant amount (makes sense). His O2 was real good last night (high 90s), still no fever. Slept a little better last night. Woke up feeling pretty crummy still. I was alarmed, his O2 dropped to mid 80s this am, back up to high 90s as we were getting ready to go to ER. So we're staying put. Nurse friend said that's not uncommon, his respiration is shallow, needs to stay on Trilogy more, take deep breaths. Igelb, he is on ondansetron for his nausea, so far it's helped just a tiny bit. Incidentally, no blood this am, must have been the radiation. What a roller coaster this has been!
 
G'day ECpara, glad no pneumonia.
Take care of you.
God bless, Janelle x
 
I'm in such a quandary. Not sure what on earth to do for him. He is SO miserable, can barely respond to me, it takes too much energy. I wonder if he is dying? Should I admit him to the hospital for comfort? His stomach us so upset, prescription meds aren't working. He can't throw up but his stomach heaves. I know it's inevitable, his stats are SO low as I've duscussed (FVC 18%, MIP 6%), and erratic O2. Pulse is high, consistently over 100. Has to sit straight up. I'm so sad for him. I can't tuck him in bed and bring him a ginger ale. That's what I did for my kids when they felt bad. This is just so sad.
 
My heart goes out to you. I'm sure you will receive some advice to reassure you.
You and Tom are in my prayers.
Janelle x
 
From experience, the ER is no place for an ALS patient. I would keep in close contact with the family doctor if possible, however in my experience they will end up wanting to send you to the ER. Do you utilize a home health nurse? Home health has kept us out of the ER more than a few times.
 
I'm so very sorry you and Tom are going through this. I hope you and he will find relief soon. It must be heart wrenching to watch Tom and not be able to take away his discomfort. Good that you have your nurse friend to call upon.
Thinking of you. Please stay in touch and let us know how things go. If you go to ER, I hope triage will fast track him and admit him.
- Charlene
 
I'm sorry, does Tom have a feeding tube? Are you in the "comfort care only" mode? You could try a tiny bit of baking soda/salt through any delivery system. And since he can't suck on things, ice at his temples and other pulse points. Some of this has to do with synchronizing breathing so I would check that when he does use the Trilogy they are on the same page. So counting breaths, music, whatever helps the synch and rate.

If you do take him to the ER, I would only do it after having a PCP or whoever your best doc is w/ privileges there, input orders to specify what they do -- e.g. they could give him stronger anti-nausea meds via IV, that would likely put him to sleep and might break the cycle, not guaranteed. I would not show up on spec.

Is this keeping him from sleeping as much as he wants? How he is doing in terms of hydration? Does his skin "snap back" normally?

As much as he can use the Trilogy with a nasal mask, I would think it would help.
 
ECpara - do you have an end of life plan with Tom?

He may not be at the very end, this may all be a reaction to the radiation therapy, but I would go with the plan anyway.

If by hospital you mean going to an ER, then I would be very cautious of doing that. Does your doctor do home visits? Have you talked again to your nurse CALS friend?

What does your heart tell you before your head starts talking over the top of it?

I agree that the 2 most important things just now are hydration and bipap.
 
What does your heart tell you before your head starts talking over the top of it?

Tillie

You are correct here. The the other day when they thought mom might have had a stroke, my gut was telling me that an ER trip was useless because by the time I got home it had passed and there was no real diagnostic test to check her for a stroke with her current condition. I did go though because home health thought it would be a good idea to, and I did not want to get accused of withholding care. After 10 hours in an ER the doctor confirmed what my gut had told me.
 
I'm so sorry Nancy. My thoughts as with you.
 
I am not a fan of hospitals for pals. every time we have gone it is a bad experience. can you get his doc to visit at home? if not, can you get him in to the office? it would be better if you feel the need to go to the hospital to have his doctor admit him--not go thru ER which is torture for any one frankly. or, call an ambulance then you will get right back and don't have to sit in that waiting room with all those sick people.

Have you thought about hospice? then you would have a nurse and doctor on call 24/7
 
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