Husband in ICU needing trach

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MSKPCK

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hi! I am in the ICU unit of hospital myhusband has ALS,He is on life support from complications from Pnemonia. Dr. wants to do a trac. I don't know what to do because he never wanted trach before, but in this situation with trach he could go on & live his ALS seems to have got to his respitory first because he can still walk with walker, still strong upper body strength, was able to function good before the pnemonia, he can still speak & swallow but Dr. thinks that his secretions will return & be right back towhere we are now. Before we came to hospital my husband could speak & eat by mouth, If I make this desicion when he wakes up he will not be able to! I don't know what to do! I just wish now we had spoke of this desicion at a greater length,but neither one of us thought this would happen this soon! Please Help! Mk wife of pk
 
Hi MK

So sorry to hear about your situation.

I moved your post to it's own thread to help you get the help you need.

I thought that the caregiver support forum was appropriate.

For those wondering about the smiley face next to the title, the post started off in the "introduce yourself "thread before I moved it and I could not figure out a way to get rid of it. This is hardly a smiley face matter.

You are in a tough position.

Doctors always seem to push for a trach earlier than needed as their primary focus is to extend life. They obviously cannot take into consideration what impact a trach will have on a particular patient's quality of life.

What are the chances that your husband will regain consciousness anytime soon? Will you endanger his life if you wait? Is the trach needed right now for survival or can he be maintained by other means? If your husband can be safely kept alive now without the trach you should wait until your husband wakes up so he can make the decision himself.

However, if it is a question of a trach or not waking up at all - I think you have to go with the trach.

All the best and take care.
 
In your position, hmm it is a tough call. If you think his progression will allow it then go with the trach, also the trach if your husband decides not to want it is always reversible. . He can always say I don't want this, they will sedate him and remove it. He will simply go to sleep, should he decide he doesn't want it. For now I would go with it and let him decide on his own.
 
I am not sure it is reversible so easily, particularly in Florida and particularly in some hospitals. Ask the doctor, and then get another opinion.

I have strong feelings about what I would want. In your position, you have to make a judgment call based on whatever you know of your husband's wishes. Unfortunately, things are not so black and white right now. It is impossible for us to discuss every contingency and "what if" situation so we put our care into the hands of others and have to let go and hope they know us well enough to make the decision we want.

I am very sorry you are in this position. Whatever you decide will be the best possible decision, because if you could make a better decision, you would.
 
yes it is reversible even in florida, if the patient can say I don't want this. He has a right to refuse care. that terry s person was diffrent she had no voice so to just remove her was someone elses decision and actually had the media not been involved with that family things would have gone smoother for the husband but bad for her family.
 
Going on and "living with ALS" (via trach) is not preferred by over 90% of ALS patients (according to what I have been told a pulmonologist who consults to an ALS clinic).

Your husband's previously stated preferences trump every other consideration, in my opinion.

V
Caregiver to ALS patient
 
I think this was one of the first cinversations we had after diagnosis. I am so sorry You are in this position. I think you should get legal advice first and then decide what to do. If he can legally have it reversed, then I say have it done. But first check if it is needed immediately, or can they use non trach ventilation until he wakes up.
 
OK, I'm a little confused. You say your husband never wanted the trach before. Has something happened that indicates to you he changed HIS mind? or is it you that have changed yours? We as CALS are in the uncomfortable position of being asked to make life or death decisions for somebody else. Just make sure you base your decision on what you think HE would want... not what you would want. Glen was very clear right from the beginning that he did not want a trach or peg. I really wanted him to try the peg but he remained adament that he didn't want it.. so I stood by his decisions.

I think your story is a good message to all PALS and CALS out there... there is no reliable timetable for this disease... get things down on paper sooner rather than later!
 
I think the clearest thinking came from Rchariton...reread this, it is excelent advise...very clear. (its the first post after yours) I am so sorry you are going through this, but thanks for sharing, as now pals have to have this kind of discussion before it is needed...in great detail. Thank you for sharing. I am praying for you!
 
"living with als" if your dead ur not "living" with anything. Medical community as a whole too include als clinics do not advocate vents or trachs. Is it hard on family, yes, is it hard on the patient ... sometimes.
These living wills are very fine lined, many are not worth the paper they are written on. But I can assure if something is going to save my life and make me more comfortable I will haunt the person declining me of that resource.
I know those who have been on vents 10-14-27 and 30 years and haven't regretted a moment of it and I know a few who got it hated it, wish they never had it but after adjusting glad they did it.
I also have known a few who were placed on it, didn't like it and ended it.
the mind changes so many times through out this desease, people change their minds both ways many many times. When working on an ambulance as a paramedic I had plenty of terminal patients in my ambulance I have had the scratch n claw me trying to get air, and only once had a patient who was dying scratch n claw me to leave him alone and let him die and m. I saved his life threw his fighting me and that person had shot half his head off, that person thanked me after his reconstructive surg, Living is all in the eyes of the beholder and inthe shoes they walk as they are walking that moment.
I fight medical people concerning my mom's vent and her desires everyday, do not let those who do not liive with a trach nor a vent deside your destany
 
My husband passed away on 6/16. We were in a life-and-death situation many times and I can tell you that regardless how he felt prior to these episodes when it came down to it he always chose to live. Obviously none of us are there with you and cannot assess the situation. I can only tell you our experience. God bless, you are in my prayers.
 
What an awful predicament to be in. My husband has refused a trach no matter what. Even temporarily to get from here to the hospital should the need arise. We have been advised by one of the neurologists (ICU and ALS) that should my husband require a trach due to infection, to possibly get him through, he would still most likely need to be in the hospital (trached) for about 6 weeks. That's another consideration. It's more difficult in your situation because your husband can still eat, walk and talk. My husband can't do any of those important things. But his decision was made when he still could and I will respect it. I do keep asking him if he'd like to change his mind but he will not. My husband is still the same person I've always loved and we, as a couple, are still so happy. If possible, if your neurologist isn't familiar with ALS, get hold of one that is and get his/her opinion. Sorry you're in this situation.
 
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I don't listen to any doctor, of any kind regarding my moms care or nurse. None of them k now ALS, they usually don't bother reading about. My mom signed for her own trach and vent. I from that point forward begand her fight in what doctors n nurses opinions are. My mom had always said she didn't want kept alive by a machine and ironically shocked me when I watched her sign for it.
I insisted on visiting a patient perferably an ALS patient at home on a vent. Theres been some hectic moments no doubt but for the most part its been good.
 
It's been 12 hours since you posted, so probably the decisions have already been made, but I'll say this, anyway.

A few facts:
- In Florida, a patient (or surrogate) can refuse treatment or withdraw treatment that has already been given.
- In doctor/nurse world, almost no one will allow a patient to die during their work shift, regardless of DNR status.
- Naturally, every human being will fight desperately for every breath.
- Morphine eliminates the pain and panic, so a person doesn't care that they're unable to breathe.
- You can find the best "Advanced Directives" by googling "Five Wishes." Easy, specific and thorough.

Now here's the part of my answer that is sure to anger just about everyone:
- In reality, if the hospital feels there's no argument from other family members, they'll help you become a surrogate and then they'll do what you say. The paperwork is incredibly simple.
- Like everything else in life, the most confident "salesman" gets his way. If they think you're not the one in charge, they'll ignore you.
- My 50-year-old PALS says she's led a wonderfully full life, and doesn't want to live with tubes. She is, believe it or not, a medical doctor. Her highest priority, to the exclusion of her own life, is her family. She wants to ensure we are happy and our kids live a good life. She also knows that she will beg for air when the time comes. So she has made all the arrangements to die as peacefully as possible. We've ensured that the EMTs, ER nurses, our doctors, and the hospital records are all in accord with "just let me go."

My Dad's Story
- My dad lived--mostly non-communicative--for 5 years in a dementia clinic. He got pneumonia and fought for air. So they took him to the ICU where everyone kept him alive, day by day, until I found a doctor who would release him back to the dementia ward.
- A few days later, his nurse called me to say he died quietly and with a smile at 7 AM.
- I was at his side before 7:15--he was still warm. The nurse said that, just a few hours earlier, he seemed to need a little extra morphine.
- I am convinced to this day that the nurse, who had come to know my father and our family very well, simply decided that the dying process needed to stop, and the death needed to finally happen, so she gave him morphine knowing it would stop his breathing and let him die without further agony.

You see, it's not just doctors who make life-and-death decisions. Military commanders, policemen,nurses, and wives of little old men in nursing homes have to make the "live/don't live" decision. Many of us here on this board will have to make that decision, too.

You are at the moment of truth that will face us all. We're all scared of this moment and we all hope to do the right thing. Please let us know how it went. God be with you. --Mike
 
Like what was already said the decision has already been made. I just wanted to share with you I have bulbar onset and developed pneumonia in march from what sounds very similar situation. I can still walk( with assistance(canes)) and eat and my upper body strength is good. I caught a cold and could not deal with the discharge. It took a week in the hospital but I got over it and haven't been back. It was slow coming back from it but contrary to the dr it is possible to live without a trach. I don't know if it is relevant but I will give tell you I am dnr and no trach.

Ps I use a sinus wash it helps reduce nasal discharge into the throat.
 
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