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pamwagg

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Hello again, everyone. I "left" abruptly in the middle of a discussion of what to do about my friend Joe's mucus problem. Everyone's advice was so helpful and I printed it out and gave him the sheets to read. But I have schizophrenia and had a relapse under the stress of it all. Luckily, other friends help him too, so they were there when I was in the hospital. Joe stuck it out, enduring the secretion problem for another month or more, though he was suffering more than he let on. He was even given a "clean bill of health" by his PCP on Tuesday morning, when he was told his chest was clear (it sure didn't sound it to me). But by Tuesday night, he was having trouble breathing again, and choking on the mucus he couldn't cough up. Two friends took him to the Emergency Room, where he was admitted with pneumonia. I visited as soon as it was possible, and was horrified to find him struggling for air. The next night he was sedated and put on a ventilator, his choice. Now his left lung is almost whited out on the chest film, and the right is full of secretions and mucus plugs as well, according to his nurses. He rises from unconsciousness occasionally, but is confused and possibly delirious (hard to know because he can't speak). He has been placed on a cooling blanket, so his fevers come down, but his status so far is nothing better than "very ill" and "unchanged."

I write all these details because I want to know: does this sound like the end? They are talking about a tracheostomy in two weeks or so, but I want to know if he is even going to survive! My sister, a physician, thinks it might be kinder of fate to take him now, to spare him an inevitable future of such infections. His two caregivers and I are also on disability and we all live in disabled housing, on low incomes, there is no way we can care for someone on a vent by ourselves, nor pay for help the state does not provide...But these are problems I would welcome because I'd like to see him smile again and because he still has a lot of life in him yet. Am I selfish to want him to live? I know he always intended to live, even if on a vent, but he didn't know then that he could suffer so. I still think he'd want to live, but not if he feels like he is suffocating.

I'm talking too much. I just have so few people to talk to about this who truly understand. Thanks for listening,

Pam
 

CindyM

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Hi Pam-you and your friends have a lot on your plate right now! I am sorry for what is happening to Joe. He is lucky to have kind people like you in his life.

The question of vents comes up a lot around here. If you do a search of previous threads you can read comments regarding all sides of the issue.

The same goes for end stages. We often recommend the Hospice folks. Their services are covered by insurance, (at least in my state) and they will come in anytime during the last 12 months of a patient's life. They have medical criteria that helps them assess whether or not the patient has a year, but sometimes the criteria is only a ball park guess. My Mom started hospice 12 months ago and now they are extending her for another 6 months.

Hospice will help with daily personal care and also make an extra in small ways, like obtaining a certain favorite food or old movie or something like that. But they will also help you. They answer questions and explain what to expect. You can also find many answers on their web site.

Hope this information helps. take care of yourself, Pam. Joe would want you to!:) Regards, Cindy
 

Al

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Hi Pam. Joe may be down but not out yet. Many people recover from pneumonia if it is caught in time. Hopefully he'll be OK. If he was on a vent he would not feel like he was suffocating. We don't mind listening. Don't worry about us just worry about Joe and yourself.
AL.
 

queen2822

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This could be the end

I don't want to be a pessimist, but I tend to think that the end is near. I will not give you false hope because I know how painful and shocking it can be. It sounds like the mucus
is going to continue to keep building up. There is nothing long term they can do for this.
My Dad died a year ago and this was the end for him, after two weeks in the hospital and several attempts to clear the lungs. Prepare him for his eternal life by getting in touch with a pastor. He needs to accept Jesus as his personal saviour if he has not already.
 

CindyM

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Prepare for the worst and hope for the best, is my motto. I start and end every day focusing on the good things in my life. Not hard to do when I drive past the homeless or read about folks who have lost someone dear to them. When I feel grateful it is easier to feel hopeful. At least for me...Regards, Cindy
 

Al

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Pam. I am not giving you false hope but I know people that have had pneumonia 3 or 4 times and they are still alive. As I said, if caught early it can be cured. Remember we are all different. Just because one person dies from pneumonia doesn't mean everyone will. I wouldn't be writing him off yet.
AL.
 

pamwagg

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Hi Folks,

Joe rallied after several days of high fevers and semi consciousness. But he was put on ventilator and just today had a tracheostomy. They do hope to wean him from the vent, at least partially and temporarily. For as many months as he can tolerate it. So we have some hope that he will come home, with nursing care, for a while at least. If he cannot be weaned from the vent, it looks like he will be sent to a good rehab hospital (he is single and lives alone; for all that we help him we do not live with him) where he can stay indefinitely, according to his neurologist, who says they have a long-term vent unit.

As for the mucus problem, yes, we have been told that this is a serious problem that the vent does not solve, nor suction, nor even broncoscopies, though they can stave off the end a bit. He has had a large amount of mucus plugs removed from both lungs as it is.

Right now though, I'd LOVE to give Joe a little pleasure after this terrible ordeal: can anyone tell me if you can swallow a little after a vent has been placed? Joe still has some swallowing muscles and would dearly love a popsicle, which he keeps spelling on the alphabet board I made him. He has been fed by tube for a long time, due to fears of aspiration (proven to be real by this pneumonia) and it would be so great if he could at least have a popsicle or taste some of my Italian ice...

Thanks so much for all your comments and advice. I don't come here as often as I should -- I simply don't have time -- but I recommend it to every CALS -- that the acronym for caregiver of person w ALS? and PALS I meet.

Pam
 

liz

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Pam -

Joe is lucky to have such a steadfast friend as you.

Liz
 

brooksea

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Pam,

Your friend is fortunate to have you a round. I am glad he pulled through!

I don't know about the Popsicle idea. Maybe someone with experience with venting can answer that question.

CJ
 

Lillie

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Pam
After my husband was trached and vented he could swallow just as well as he could before he was t/v'd, but they wouldn't let him try to eat anything until they did a swallow study to make sure nothing would "go down the wrong hole" and cause him to choke. He maintained his ability to swallow and enjoy eating for about a year after he was trached.

Good luck to Joe, I hope he gets his popsicle soon:)
 

pamwagg

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Hi Lillie,

Joe developed aspiration pneumonia, probably due to inhaling his own saliva or respiratory secretions, which could not be coughed up. He has been coughing drinking thin liquids for months now, but when he had a swallowing study the first time 9 months ago, he said the barium thickened the water just enough to make it swallowable, so he "passed", was told he compensated for his weaknesses well. They told us the same thing about Joe and eating now with the T&V-- he has to wait until after another swallowing study. But I believe they are not hopeful about it due to his having already had this sort of pneumonia, caused by faulty swallowing and ineffective protection of the airway in the first place (from what I understand). So far, all they can offer him is a melted popsicle and a swab dipped in it to give him flavor but no real liquid, which did not appeal to him.

Do you know if they are drying out his secretions and saliva now that Joe has T&V? I notice that he no longer drools or has any problem with oral secretions whatsoever. What does this do to the teeth? And if he can't have water in his mouth, lest he swallow, how does he take care of his teeth? Saliva is the primary agent that keeps teeth healthy and clean. Perhaps without food, teeth don't decay either? Dunno...

Argh, so many questions, but he will be going to the ICU step-down unit soon, I believe, and then eventually to a rehab hospital where they will try to wean him off the vent temporarily and back onto bipap (though that may mean bipap fulltime). I'm crossing my fingers on this one. He has still so many physical capabilities that it would truly be tragic for him to be captive in a hospital just yet. Just 2 weeks ago he was driving and shopping and going to his beloved political meetings...How things change!

Thanks for listening.

Pam W
 

JACKIEMAX

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drooling, etc.

my husband, horace, sleeps on a bipap ea. night and once for two hours during the day and always has some drool. he thinks it is sweat or something from the mask while in use. but, you folks probably know better - so - what is it really?

jackie
 

Lillie

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pamwagg said:
Hi Lillie,

Joe developed aspiration pneumonia, probably due to inhaling his own saliva or respiratory secretions, which could not be coughed up. He has been coughing drinking thin liquids for months now, but when he had a swallowing study the first time 9 months ago, he said the barium thickened the water just enough to make it swallowable, so he "passed", was told he compensated for his weaknesses well. They told us the same thing about Joe and eating now with the T&V-- he has to wait until after another swallowing study. But I believe they are not hopeful about it due to his having already had this sort of pneumonia, caused by faulty swallowing and ineffective protection of the airway in the first place (from what I understand). So far, all they can offer him is a melted popsicle and a swab dipped in it to give him flavor but no real liquid, which did not appeal to him.

Do you know if they are drying out his secretions and saliva now that Joe has T&V? I notice that he no longer drools or has any problem with oral secretions whatsoever. What does this do to the teeth? And if he can't have water in his mouth, lest he swallow, how does he take care of his teeth? Saliva is the primary agent that keeps teeth healthy and clean. Perhaps without food, teeth don't decay either? Dunno...

Argh, so many questions, but he will be going to the ICU step-down unit soon, I believe, and then eventually to a rehab hospital where they will try to wean him off the vent temporarily and back onto bipap (though that may mean bipap fulltime). I'm crossing my fingers on this one. He has still so many physical capabilities that it would truly be tragic for him to be captive in a hospital just yet. Just 2 weeks ago he was driving and shopping and going to his beloved political meetings...How things change!

Thanks for listening.

Pam W

Hi Pam,

I hate to hear that they're not hopeful about Joe's swallowing "expectancy". This has got to be the suckiest disease there is, but Joe is blessed to have a friend who is so caring like you. I'll do my best to answer your questions based on what my husband has experienced with his trache and vent....

Not sure what to tell you about them giving Joe something to dry up secretions, best bet would be to ask them and to tell them about the change and see if they have any clues to what's going on. As far as taking care of his teeth, that one's easy. With my husband, we use a colgate spin brush for the brushing (he has no arm movement so we have to brush his teeth for him) and then use a suction machine with a yanker (sp?) tip to suction out all the saliva and toothpaste. Then, to rinse, we take a small amount of water in a straw and drop it in his mouth, he swishes as best he can, and then we suction again. There's also special toothbrushes you can buy to use with a suction machine - they look similar to regular brushes, but they have a hole in the middle of the brush head for suctioning. We like the spinbrush better, it gets the job done quicker. We've been fortunate (thank God and knock wood) that Ken hasn't had any teeth problems (that we know of or that have given him any pain) that have required a dentists attention.

One thing that I HIGHLY RECOMMEND FOR ANYONE ON A VENT is something called a Cough Assist. Here's the link: http://www.coughassist.com/ This is a machine with a hose that connects directly to a trache. With one flip of a lever the person is given a big breath of air, and then when the lever is flipped the other way, the person gets "suctioned" - we call it "getting hoovered" since it's so much like a vacuum cleaner :mrgreen: - it works similar to the action of a person taking a big breath and coughing. You wouldn't believe the junke we get out of my husband's lungs with this thing, it's been a godsend. We've had one since my husband was first T&V'd and I know that this is the one piece of equipment that has probably helped keep him from getting pneumonia and out of the hospital for the past two years.

Tell Joe to hang in there, he DOES sound like he has way too much life left to give up. I'll keep him in my prayers that he gets off the vent soon and can go back to bi-pap. Oh, and one thing with the cough assist, he could even use it now, whether he has a trache or not.

Keep in touch dear.

Lillie
 

pamwagg

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Hi Lillie,

Joe has a cough assist machine, which he did not use very often. I am not sure why, except that he did not do a lot of the things that were recommended for his self-care, partly due to the lack of motivation that comes with the schizophrenia that afflicts both of us, partly because he was so overwhelmed by so much to take care of in terms of the "busy-ness" of the illness -- doctors appointments and visiting therapists of all stripes and so many matters to be dealt with that he, without a voice, could not do on his own. I will encourage him to use the machine when and if he gets out of the rehab hospital, which they are now holding out the hope of his possibly doing, at least for a time. In fact, since you say it is so important, I will try and see to it that his friend, K, and I make it a scheduled stop to see that he use it.

Oddly enough, I just had a dentist appointment with a hygienist who impressed me mightly with her use of a suction machine and the dental toothbrush. She was able to make brushing my teeth, a dental visit necessity I dread, virtually mess and rinse free with her masterful use of water and immediate suction. No one else has ever been able to do that as well. So I wondered, quite seriously, if she might show me how she does it, in order that I might use Joe's water pik or electric toothbrush and suction machine to clean his teeth the same way once his arms are too weak to handle the task himself. (Oh well, probably pie in the sky notion but it sounded good).

Alas, due to my recent hospitalization, he has been reducing his reliance on me for caretaking, not increasing it, so he might not even let me do it at all. He has said that at this point he only wants me to be his girlfriend and to visit and to live my life and stay healthy, that I should let others in better health help him. But I WANT to help him more than just doing internet research. I feel so helpless these days, not that anyone can do much now that the hospital is doing it all. Still...

Pam W
 

CindyM

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Hi Pam-smart move to ask a professional to teach you! I like that idea. Maybe Joe wants to try to remain as independant as possible or maybe he wants one area of his life where he can feel "normal" but no matter why he is not ready to let you help, give him his option but stay nearby and at the ready. I'm guessing he will need you soon enough. Regards, Cindy
 
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