CSElliott
New member
- 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.
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.