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Nuts

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Feb 23, 2014
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2,636
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Lost a loved one
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01/2014
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Littleton
We are four years in---why had I not heard of silent aspiration before today?

Between November and January, hubby went through three rounds of pneumonia and one case of flue. It's been tough, but he's doing better.

He was explaining to the Speech Therapist that he went through weeks of choking on everything, but then things got better and he has very little trouble swallowing. I knew from the look on her face that we didn't want to hear what she was about to say...

Apparently, the body can acclimate to aspiration--so the aspiration continues, but without the telltale cough reflex. She told him he's probably aspirating on everything now and that if he continues to eat and drink by mouth he will end up back in the hospital.

I wasn't prepared to have him cold-turkey off eating by mouth, but that's what he said he's doing.

Silent aspiration---just one more nasty surprise from this monster.

Becky
 
So sorry it was a whammy for you :(

It's a bit like no fasciculations meaning the muscle is completely stopped working so there are not even the noisy jerky signals now.
 
I'll take that lesson before we have to learn the hard way! Thanks for posting.

Makes complete sense, especially with Tillie's comparison.

I guess the guideline to deal with ALS is to never assume improvement.
 
Becky I’m so sorry. Actually I had never heard of that either. Brian coughed his whole time. Thanks for sharing.

Hugs as you go down the tube feeding path. You will find it’s no so bad. However Matt will miss enjoying eating. I know Brian did.

Hugs,

Sue
 
I have just given up even trying to swallow a few bites for this reason. It sucks but is somewhat a relief.

Hugs to Matt and you.
 
News to me as well--thanks for sharing.

Ed
 
Silent aspiration is actually a fairly common cause of pneumonia, especially for people who have trouble swallowing or clearing secretions, and for people with bad gastroesophageal reflux. For PALS, I would think a g-tube would help and also eating sitting up, and keep head and chest elevated at least an hour after eating or tube-feeding.
 
I knew about silent aspiration because my husband had multiple episodes of pneumonia close together with no coughing. This suggests that silent aspiration may be the cause. This was confirmed on a modified barium swallow.

Sharon
 
Poor Matt, he had a bad night after yesterday's news, and I'm a raging witch (spelled with a B) when I'm tired and am wakened repeatedly. I just can't help it. ARGH.

We've been using the feeding tube part time, so the transition for me will actually be easier. I guess I'll need a plan for crushing pills and having them dissolved if we are going to be away from the house.

There was more bad news about his breathing, but I'll post that elsewhere. I figured if I hadn't read about silent aspiration here that someone else might not know about it too.

Poor guy---eating was one of his favorite pastimes. I feel bad that his last meal by mouth was a sandwich in the van just before we went into the clinic. As he said last night....no last meal at (and then list the places). Maybe it was easier this way....
 
Becky, Brian didn’t get a last meal either, tell Matt he’s not alone. Hugs to him and you.

Sue
 
I guess I'll need a plan for crushing pills and having them dissolved if we are going to be away from the house.

Some pills, probably many, don't really dissolve in water. The pieces are just in suspension and small enough to pass thru the tube. I use one syringe for the medicine and then a second one to flush any residue out of the first one and down the feeding tube.

After months of crushing pills, I thought why it is that the primary ALS drug is in pill form rather than liquid. It is the most difficult to crush and certainly doesn't dissolve. Asked the Dr. and he didn't have an answer. Guess it's just one of those examples of the drug companies putting profits above customer support.
 
If you are referring to riluzole Larry there is in fact a sublingual ( dissolves under the tongue) form that is coming soon. I spoke with a company representative at a conference in December. It will be branded and I am quite sure it will be terribly expensive.
 
Chris didn't get a last meal either - just a terrible aspiration pneumonia, but by that point he was only eating a little totally pureed gruel by teaspoon but it took him to the beginning of the end.

Maybe knowing you were eating a last meal wouldn't be as good as it seems anyway xx

I crushed and soaked the few meds Chris used - but we used hardly anything anyway and the few we had were easy so long as you ensure you crush them properly.
 
Becky, I don't crush the pills for the feeding tube. I let them dissolve/suspend like the nurses did in the hospital where my PALS had his PEG placement.

So I have a 20 ml syringe (go figure liquid oz, it's about one gulp) for each pill. I put the pill in the barrel of the dry syringe. (If fancy strikes me, I might break it in half, but it's no need.) I push the plunger in until about a thumbs width from the end. I have a glass full of water (I haven't yet tried it with a bottel on the road) and suck in the water with the syringe. (Cold water will work. I use warm water because I guess that it'll dissolve better, quicker or at least will feel nicer when it's put into the feeding tube.)
Then I put the syringes flat on the counter (they won't spill) and do nothing while the pills dissolve. Well, most times I do quite a bit, mess around the house and forget about the whole deal. That's why I don't know the minimum time for each pill, but I guess 5 minutes is too short, 10-20 min is good. Some medicines should be applied within 30 min after dissolving, like the non-crushable Omeprazole MUT ( to protect his stomach against ibuprofen) which is well suspended in apple juice because that simulates the stomach acid and will better keep the acid resistent Multi Unit Tablets stable.
I shake the syringes to see if everything is dissolved (like Larry said, they're not really dissolved but suspended, the Riluzol even has it's coating floating around like an old reptile skin but it goes through the tube alright). Then with the opening on top I push out the remaining air (that was important to shake it up better) and go visit my PALS. Attach the syringe to the tube, either directly with an adapter or on the long tube while the formula is running. Push in the whole thing, either medium speed or fast, here's where the noticable warmth might bring a smile to his face. Then I draw that same syringe full of water again, put that in and proceed with the next medicine in the next syringe.
The nurses told me to not mix everything up in one big syringe but to administer each drug seperately and flush with water between them. I guess this is a clinic precaution because some drugs might interact and a nurse doesn't have to know all this, when she'll just do as told and keep it all neat.

So that's my pill fairy tale.

My boyfriends starts to cough and choke on liquids (thickeners are not his thing so far), eating is still pretty safe. As so often this forum is always along with us and keeps us two steps ahead hopefully. After reading the last posts I suggested to him to consider any meal his last meal. He answered: Why do you think I enjoy eating so much after I got out of the hospital? Good boy!
His speech therapist told us a bit about aspiration today. She basically said, that once there's stuff inside the lung there's not much you can do against it. Coughing works for a reason, if that fails it's the highway to pneunomia. Hope we don't have to learn the hard way when that last meal was...
 
So sorry Becky and Matt! Silent aspiration is another one of those silent problems that we usually learn the hard way.

We crushed most of Cliff's meds. Just a note about time release meds, they are not to be crushed.
 
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