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Old 09-15-2007, 09:00 AM   #1 (permalink)
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Default Tracheostomy and secretions

Dear All
My mother was diagnosed with ALS last sep. She has deteriorated to need assisted ventilation for which she underwent Tracheostomy last tuesday . Presently secretions and cough reflex are troubling her a lot. It is very difficult to see her writh in discomfort whenevr she has a bout for which suction has to be done. Does anyone has any experience with this problem and any solution?

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Old 09-16-2007, 06:46 PM   #2 (permalink)
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Hello namita. Welcome to the fourm. Sorry to hear that your your Mom is having trouble. We have lots of PALS (people living with ALS) and CALS (People taking care of someone with ALS) who can probably offer some tips for your Mom's secretion troubles. My first thought is to ask the ALS clinic who follows her for some advice. They might prescribe something to help dry her up or perhaps a machine to help her cough on her own.

I am sure some of our resident experts will check in soon. Cordially, Cindy
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Old 09-16-2007, 09:42 PM   #3 (permalink)
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Hey namita!

My mom got her tracheostomy about a month ago! And I can report we survived the operation as well as her depression (she wanted to DIE), & her feeding tube operation as well (She's gained 5 pounds). I dohave to report she is currently in hate with her pulminologist who suggested the trach

The coughing and secretions DO let up. Sure enough - little by little.

One thing I learned... if your mom has enough strength to cough... then she can cough as you are suctioning her without jamming that tube all the way down to stimulate a cough. That has helped TREMENDOUSLY.

Also - prepare yourself for the first time she gets her trach replaced. Not surgery wise - just when the old is popped out and a new one popped in. It was horribly traumatic for ME... I about fell ooutta my chair.
THen the DR. Couldn't get the inner canula in right so my mom did it herself.
It was a little nerve wracking and new for mom. There's a little blood and I was told to expect that for a while... she's fine today (2 days later).

They did give her a child's antihystamine to help her saliva issue (she has a LOT)
but it makes her sleepy... so she isn't much into that.

After @ 4 weeks we suction 3 to 4 times in 24 hours. It's getting ot be "old hat" for her.
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Old 09-17-2007, 12:35 AM   #4 (permalink)
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Thanks for such a prompt reply. She has to undergo her first trach replacement tomo. I just hope she has the strength and will power to undergo the same. I will ask the doc if we can give her some short acting analgesia while replacing.Incidentally she has landed up with pneumonia ,so added secretions on that account .Hopefully she will respond to the treatment for the same. We keep praying for her comfort all the time. I am not sure if we did the right thing by going ahead with trach and vent but there was little choice . You just cant let go. Our purpose waas to make her comfortable and we have succeeded to some extent but i am not fully satisfied . Hopefuly with some more time she will be more comfortable.
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Old 09-17-2007, 11:11 AM   #5 (permalink)
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Dear Nanita,
I too have a tracheostomy. I have been home for 5 weeks now after a 2 month stay at a vent rehab hospital that the ALS community refered us to.While in the rehab I went through serriouse secretions (well to me they seemed serriouse)that were only clear build up that drove me nuts. After my stay in the rehab joint I came home to stay. I started to get used to how the secretions needed to be attended to. I want to point out that suctining too often can cause problems with the fragile inner trachea. I was worried about the over use of suctioning so I just tried to get used to the feeling of lose secretions. It can be aggravating. I wait until the secretions build up enough to cough them up as high as possible. Once they are coughed up high enough my caretaker can put the catheter in the canula only a couple inches and then they can suction out everything from a safe distance. I found that using the nebulizer treatments 4 times a day helped very much. The most important part of all is to be very clean while doing all the care. Subconciously it can be very scary watching someone that's about to touch you, whipe their mouth before they begin. If your mother can manage the secretions until they build up enough so she can cough them out, then she should be able to cope with the rattling that goes on all day.
I sure hope this helps. You can allways ask for help on this forum.
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Old 09-18-2007, 01:33 AM   #6 (permalink)
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Thanks for the tip, Brentt . Will let her know . Unfortunately she is running fever despite all precautions.
Also any suggestions for type of ventilator for home ? She will need one once we tide over the present crisis and start heading home. ( I really dont know when and under what circumstances )
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Old 09-18-2007, 10:03 AM   #7 (permalink)
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Hello again Nanita,
I pray your mothers fever goes away soon. I had a very high fever after my procedure was done. I was on so many pain medications that I don't even remember the first 3 or 4 days after my operation. I did get a small spot on my lung prior to my release but they loaded me up with antibiotics so as to fight this thing. They were not too concerned as it had no other symptoms.
I have the LP 10 Home ventilator. This seems to be a very dependable vent and it has been around for a long time. I have heard that the laptop types tend to have problems with malfunctions.
Make sure your provider provides a backup vent and a backup suction machine. Also try to get the 10 hour backup battery that works with this vent.
Good luck and may God be with you.
Your friend Brentt
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Old 12-20-2007, 01:25 PM   #8 (permalink)
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I stopped by this ol thread to see how all were doing.
It's been pretty quiet - my mom just went back for outter cannula change #2 - with a cold.
This week has been scary for her: she is still spotting blood after 6 days ...

The Dr initially said that the more scar tissue the more blood - and with a cold/cough that too will aggravate things.

So... now we are calling the Dr on the eve of a Holiday weekend to get some words of comfort (hopefully) for my worried mum.
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Old 12-21-2007, 02:23 PM   #9 (permalink)
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I hope this gets sorted out soon, Ohio, for you Mom's sake as well as the rest of you!
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