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CSElliott

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Joined
Dec 13, 2015
Messages
7
Reason
CALS
Diagnosis
11/2013
Country
US
State
CT
City
Wallingford
My PALS (bulbar palsy, PEG, no food or drink by mouth) got his Devilbiss suction machine a few months ago, tried it a couple of times and decided spitting was more efficient. He's been spitting/wiping ever since and struggling with thick, pasty phlegm however he can. We had the technician come out and replace it with the exact same one and new tubes and it's equally lame. I can probably get more suction power from a turkey baster and without the thunderous motor noise . . . I don't get it.

One weird thing is that without any tube attached, the suction directly from the hole is tremendous - if I put my finger to it, it's actually difficult to get it off. We've tried three different style wands, the last one with no hole or on/off switch. And the adjustment knob makes no difference. So I'm wondering what we can possibly be doing wrong or if this just how they are. When he was in the hospital for his PEG he was loving the (quiet) one that came out of the wall but we were told these personal ones can't be as strong for liability reasons and safety. Many people talk about how great they are, the doctors say it's the best solution for all secretion management and I'm worried that soon we'll have no choice when he won't be able to manage it himself. I know he is getting scared of that more than anything else. He's already having difficulty now that his neck muscles went. I read about people choking on goo balls too . . . I'm very worried.

Controlling secretions is almost a full-time job at this point . . . researching, balancing dry mouth, trying this, trying that, meds, supplements, water . . . then stressing out when none of it makes enough difference. I've gotten used to brushing off advice to use a suction machine as if we're "suction machine challenged" but that's ridiculous.
 

lgelb

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Joined
Nov 5, 2009
Messages
10,094
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
CS,

It's not you. It's how they are. They suck [well, not much, as you've noticed]. We stopped using ours after Larry broke a tooth inadvertently clamping down. If anything, it mostly moved things around and made the sensation worse. Fortunately, he was able to "spit up" saliva/occasional mucus (sounds like your PALS' is thicker) into a folded paper towel half we held, for the duration, so we just did that, esp. on waking, after eating and before bed. (Larry's other conditions ruled out the equipment mentioned below). For someone with an intact nose, the olive tip might help for mucus there.

Pineapple, papaya, coffee, Alka-Seltzer, soda, humidification, BiPAP titration during episodes a few of the standbys here. I'm sure you've tried lots. Some people here use the CoughAssist with success. Some also use the Vest for mobilizing secretions for the CA to help get up. Ask your clinic about these if they haven't brought them up.
 

affected

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Joined
Apr 26, 2013
Messages
13,322
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
I'm glad someone could answer as in Australia they won't even give you a suction machine, and we don't have cough assist her, nor neudexta! So I can never give anything on those subjects.
 

Jeffreyp

Active member
Joined
Aug 14, 2013
Messages
36
Reason
Loved one DX
Diagnosis
08/2013
Country
US
State
MO
City
Cape Girardeau
We had a portable Devilbis suction machine and liek you it did not work well for thick stuff. Our respiratory company then brought a non-portable Medline HSC 7000 and it does a much better job.
 
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