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NotMyDad

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First, I know I started several separate threads, and I wonder if that's okay. Or should I just start one and stick to it? I start a new thread with each new question, and I'm afraid I may have more questions, and more each day...

My dad's doctor recommends that he gets a trach together with his peg.
My dad is bulbar onset, but I'd say not a quick progression (but that's just my impression??). He was diagnosed on November 2016. He is weaker, but walks (one leg causes trouble so he has to be careful); uses his arms without problems (just less strength). Good breathing. But horrible on the bulbar aspect probably mostly because he should have gotten a peg a while ago...

But his worst nightmare is saliva/mucus - and here also because he won't use his cough-assist or suction. He says he has a very sensitive throat and cough assist makes things much worse.

So he spends hours a day trying to cough things out because something (saliva ,mucus?) constantly bothers him deeper in his throat.

That's why the doctor recommends trach.

But i read horrible things about it and am very scared....
I read many of the threads you recommend about trach, but still don't know what's the right thing to do in my dad's case.

My dad lives just with his wife (who can be of no help because of her health problems). Would he be able to suction his trach by himself? Or would his independent life be over?

If vent is not needed, can trach be still strongly recommended?
 

Narrowminded

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I hope Sharon jumps in as her husband has a trach but no vent.

Brian is trached and vented and i can tell you that if he has enough dexterity, he could be taught to suction himself. However, the trach won’t eliminate the mucous issue and at least at first could actually make it worse, due to the irritation. Suctioning is irritating and you can end up in a viscous backward spiral. Suction to try and remove the feeling of mucous which irritates and that creates more mucous, because the mucous is your body’s way of healing the irritation. Whenever DH is sick, there are times I make him wait a little for the suction to try and get the circle going in the right direction.

I cannot tell you what is best for your Dad. I can only pass along what we have experienced. Every case is different.

Hugs,

Sue
 

NotMyDad

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I am very grateful for your answer, Sue! It's so helpful to hear about another person's experience.
 

pittsburghgal

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As Sue said, my husband has a trach but no vent. He uses the Trilogy at night on BIPAP settings.

Frank feels that the cough assist does not help him so we don't use it. I suction him because he has no use of his arms but I do think that if you had normal use of your arms and hands that you could do it yourself. Any time Frank has coughing episodes I suction him and this really helps quite a bit. Sue is right in that initially after getting a trach there is a lot of suctioning involved for the first few months until your body gets used to the trach. After that period, he went for over a year without needing suctioning at all. Now we are starting to need more frequent suctioning because he is producing more mucous and saliva. The trach site needs daily cleaning but this is easy.

So based on our experience, I would suggest that your father get a trach when he gets the peg. I think it will help him with the mucous/saliva problems. He can decide not to go on a ventilator when his breathing deteriorates if he chooses.

Sharon
 

Nikki J

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I would suggest that if this is the path he chooses that you insist he gets some assistance for the first couple of weeks as his wife can not provide any.

I do think with good manual dexterity he should be able to care for both PEG and trach himself as long as the dexterity lasts. I have some dominant hand issues but I am pretty sure I could handle both now if needed ( I have done both for others so know what they entail)

However while he is recovering and learning I think he will need some back up. It does not need to be a licensed person if you or another family member or friend could be there. A brief rehab stay if there is a place that takes trachs might be another option if that is not possible.
 

NotMyDad

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Thank you, Sharon, I am so very grateful for your help! My father still says no to trach, but I'll keep talking to him so that he learns more about it.
 

debwilson77

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My husband is trached and vented. He can suction himself if needed however I usually do it.
 

NotMyDad

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Nikki and Deb - thank you!
Two weeks of help will definitely be feasible, I thought it would be more like constant help needed for the first 4-6 months. So it's good the worst kind of recovery doesn't last that long....

But, well, of course we are heading there anyway towards the day when he won't be able to live independently.....

My family isn't proactive, but reactive and this scares me so much because I am here with my parents only for a few weeks twice a year and then an ocean away, and I am the only one thinking about what will happen for sure...
 

lgelb

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If you are usually an ocean away, and your dad's wife is not going to be the primary caregiver, I would certainly get some kind of long-term arrangement, not just a rehab stay, set up in conjunction with the PEG with or without the trach.
 

wishmobbing

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I don't know anything about getting trached. With that out in the open I think that his wife or another very close (and present) person has to be onboard with this. And he should be onboard close to 100%, he has to live and deal with it.
Wish I could take away some of the worrying. It must be very hard to be so far away. It's good that at least you get informed and pass info on and are proactive. You can help him come to his decision by providing different viewpoints and stories.
 
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Nikki J

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I am sorry I did not mean to say 2 weeks and no more worries. I do think if he has his currently reported abilities he should be able to do the basics IF he is motivated. If he isn’t it will be a fail from day one.

He will not continue to have those abilities though and no one can predict when that will happen. There needs to be a plan for that time or you will be dealing with a crisis. Long distance caring is very hard.
 

debwilson77

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Did not mean to make it sound like he could do this all alone even if he can suction himself. He will need someone to help with things.
 

NotMyDad

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I think I understood it correctly, but didn't say what I meant clearly enough, either.

Perhaps my question/hope would rather be:

can he stay by himself at least sometimes after he heals from the surgery, or will he require care 24/7?
 

NotMyDad

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I do have two sisters who live not far from my parents (within 15 minutes by car); both have many children, small children included, so that complicates things. In addition, both of my sisters, and both of my parents --- hope that things won't get so bad.

I don't know how to talk to them anymore...
I so well remember a year ago, and over a year ago when everybody was hoping he wouldn't lose his speech... And then that he wouldn't lose the capacity to eat. Now everybody is hoping that he'll never lose the capacity to walk and use his hands.
And it seems absolutely horrible to be the one bringing the bad news and telling everybody that the horrible will happen...
 

Nikki J

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If his function is as good as you say as long as it remains that way after a recovery and learning period I think he could manage some alone time.

If he does not want a trach though he won’t be motivated enough to make it happen. It isn’t for everyone. My current future plan does not include a trach. I will stop with bipap and feeding tube unless being there changes my mind
 
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