Status
Not open for further replies.

littlered

Active member
Joined
Mar 20, 2013
Messages
52
Reason
Lost a loved one
Diagnosis
06/2012
Country
US
State
NV
City
Las Vegas
I'm seeking advice as neither my Pals or Cals reads the forum.

I'm a friend of a Pals and Cals. Cals has pneumonia and is in the hospital. Pals is home with a caregiver. Pals is now coughing. They have tried the vest which helps for a short period of time. Caregiver is having trouble getting the gunk up with the cough assist.

They have calls into both their PCP and ALS doc. Neither has called back yet. Caregiver is asking for any suggestions - she knows I read the forum daily.

Should they go to the hospital, urgent care or ? Caregiver must be very concerned if she called me. I'm concerned if they go to the hospital that oxygen will be forced and I'm not so sure they truly understand the ramifications of oxygen with ALS.

Any suggestions greatly appreciated!
 
Often, vest/cough assist gunk has to be removed w/ suction machine as last step -- is that the procedure?

If it is "stuck," it may be too thick. So would try warm liquid by tube or mouth (e.g. pineapple or papaya juice). Also would check humidification and filters of room, all machines, including BiPAP. Some use Alka Seltzer as you have read.

Assuming the PALS is on BiPAP, would increase IPAP or volume target, turn off backup rate, reduce trigger and cycle sensitivity.

If the PALS can transfer, would move to another room or outside, as "different air" can be useful.

Going to ER depends on the person's stage and wishes. Can you tell us more about those? It can definitely be a dangerous place.
 
Just got the trilogy last week. Only using it at night. They are scared Now calling 911. I did tell her to stay with Pals. Thanks Laurie. Just don't know what advice to give them. Will tell them what you said
 
I'm so sorry, how frightening for everyone.

I hope the hospital understand how to clear her chest and look after ALS. However it is probably the right call because it's important now that she is carefully checked for pneumonia herself. They will do a lot more for her than just stick her on O2.

I think they can take their trilogy with them, Laurie can confirm that.
It's imperative the carer stays with her.

Please keep us updated xxx
 
Thanks Tillie. Told her to stay with Sheree. Will now advise to take triology Paramedics are there. Hope Ed gets out of hospital today but he's still going to be sick. I feel helpless, can't even imagine how all you Cals feel
 
Yes, she should have her own Trilogy. Tell the caregiver to demand that she be kept on it while everything else is going on, and that the lead respiratory therapist or pulmonologist be on hand to assess the need for different settings.
 
I'm here with the caregiver at the hospital. Not coughing too bad but sitting upright. So far none of the nurses know anything about ALS
 
Oh I'm so glad you can be there too! I feel much better about the situation as I know that you will advocate well.
 
As a note - at least here in the hospitals we have been it, you are not permitted to use home equipment, including the trilogy. Its and insurance thing I believe. They will probably put her on a hospital machine, but will using your current settings from the Trilogy

Hugs,

Sue
 
I spent the afternoon at the hospital with Sheree and the caretaker. They kept her overnight. You are right Sue, I took the trilogy back home when I left. They actually said the trilogy was part of the problem - that it was pushing the gunk back down. I hadn't read that one before. Has anyone else been told that?

Caregiver is already there this morning and they have begun some sort of treatments. I am at work and will get there as soon as I can. Her hubby is doing better and should be out of the VA hospital today. Terrible way for him to get some respite, but I guess it's better then none at all.

It is mind blowing that hospital staff have no clue about ALS. The only one that had seen a Pals before was the respiratory therapist. She's seen two. I know none of you exaggerate these situations - but they are totally clueless!

Thanks everyone
 
The Trilogy if set properly for her needs would help her cough up gunk, not trap it. That said, everyone has unexpected coughing episodes and that is the time to change the settings (the Trilogy has a two-setting memory, so one can be set for those). When uncontrolled coughing occurs, the backup rate/volume control should be off, the IPAP/PS should likely be higher, trigger and cycle sensitivity reduced so essentially the machine is working with the PALS, not against her.

Not to preach a sermon, but "set and forget" doesn't work for any kind of ventilation.
 
I get you Laurie. I was just able to read your response to Sheree. She's going to call her rt to come show them adjustments. Your help is invaluable. Thank you.
 
Thank you all for your support and advice. Sheree is home with antibiotics after a lousy night in the hospital. Laurie, they are calling the RT to come and adjust the Trilogy.

I just have to share the comment by the occupational therapist...

"I've only seen men with ALS, you are the first woman. It has to be the worst disease on the earth. Worse then MS, Parkinsons and others. Really, the worst disease."

Really? You really just said that to my Pals????? ( I apologize to any Pals reading this). My hubby told me I should have told her to shut the f*@$ up.

Have a peaceful day, all.
 
Glad she is home.

Maybe just me but the comment would not upset me. Not anything I don't know.

Interesting her comment about male female. I actually had a nursing home nurse say, when he heard my sister was dxed, that he had thought only males got ALS and only females MS as he had never seen the opposite
 
So glad she is home, now to start getting that infection cleared up.

Funny I always found it comforting if someone realised ALS is the worst monster there is as it felt like they may not understand still, but they had a clue that this is nightmare avenue. However, saying that, sometimes it is all in how it is said - maybe standing there at the time it came across in quite a different way.

Sheree is so fortunate to have such good friends as you and your husband xxx
 
Status
Not open for further replies.
Back
Top