Life on a permanent ventilator?

I think I posted this sometime before, and hopefully not in this thread as it would be an indication of deteriorating memory.

When Dad was trached and I wanted to learn more about it, I found some websites of people dealing with similar, and worse situations.    I was shocked, sobered, sad but admirable of the woman whose young child had a trach, and would have one all its life.   I don't recall the details, but it was such an overwhelmingly sad situation for both the parents and the youngster.  

In fact I just did some quick checking and found what appears to be very thorough advice for parents with children who have trachs:

https://www.gosh.nhs.uk/medical-information-0/procedures-and-treatments/living-tracheostomy

I read some it of and just felt overwhelmed thinking about it.    I can't imagine the challenges parents and children would face when dealing with a trach.

MACinCT, thanks for that very insightful information on high levels of oxygen.    Thinking back, I probably have written in my extensive notes some info on oxygen levels, as I charted what seemed to be relevant, but I don't remember offhand even where those notes are.

There were a few subsequent periods during my father's later years when he declined rapidly and was on higher levels, 11.0 liters if I remember.   I was told by a nurse that that level was high and potentially dangerous, but (also if I remember correctly), he was able to be weaned down.

AARDs or PEEP were never mentioned, to the best of my recollection.  But it was almost as if I no longer need to remember, and so some of the memories just began to fade away.


AhmiJoy, I'm answering in the mainstream section so others can read, and b/c otherwise I might not find your response again as I tend not to read the "reply to" responses.

I wish I could offer insight into the financial situation, but I have no experience with Medicaid.   I think to be on the safe side and to be "proactive" (as the business folks call it), I'd start working on the funding situation as soon as I felt ready, but not until you get some good rest.

Overwhelmed is probably an understatement for some of the conditions folks here have faced, and your situation is certainly one that would challenge anyone.

Please know and remember that this may be the most difficult time of your life, and be sure to take care of yourself (how many times have we told that to ourselves??).  Seriously, this is one of those situations in which literally everything except the basic necessities can be put aside so you can get enough rest to maintain your own health, and be able to work with your husband to make good decisions.

I remember one night after returning from the hospital in Ann Arbor, a good 30 miles from my sister's house where I was staying, and another 15 from mine, that I lost sense of what I was doing and drove over a curb, blowing tires and ending up spending time at the fortunately very, very close local Belle Tire to get the tires replaced.


I had wondered after I posted if your husband was conscious, and I'm assuming from your response that he is.  

If it's any consolation, I had a rough time during that period as well - it's normal.   There was one time when Dad was hemorrhaging but the source couldn't be determined.   He wasn't unconscious, but just couldn't respond other than move around in his bed.  It was Christmas Eve.   A year earlier, my sister was also on a ventilator, in respiratory failure from metastasis to her lungs.   

(That's one reason why I dread that holiday...too many horrible memories.)

That was when I first learned about nurse practitioners.  The NP working with Dad was SO helpful; instead of giving clipped answers as some doctors do, she explained the situation, what was being done, etc.

I remember kind of shuffling along the corridor when I left, and was so overcome that I just plopped down in one of the couches along the corridor.   People stopped by to console me, and offer to help, but there was nothing they could do.   

I finally made it downstairs, and had to keep telling myself:  "one step at a time", as I was too mentally fatigued to walk.  But eventually I made it to the car. 

I wish we lived closer; I'd cook up a good meal and bring it over for you, along with flowers to cheer you and chocolate to sustain you. 

Know that you're in my thoughts and I'm hoping for peace for both of you as you travel this journey, and peace as well as you and your husband consider the options.

Hubby cannot speak but is cognizant and aware and can make his wishes known.

What does he want? What are his wishes? Advice? In your situation.. I am not sure... Are his wishes known and written down in a Living Trust? DNR? Medical or legal document?

I need to make an appointment for me... My wishes are not legally written down anywhere.... :-(

Yesterday everyone heard about the sports athlete whose helicopter crashed..

We never exactly know when our time is up....

Everybody and family is different... You need to decide these delicate decisions yourself, AND BE OK WITH THOSE DECISIONS!!! It is okay... Your decisions will be right for your family and situation...No Matter The Outcome...

God Works in Mysterious Ways... Trust me... my friend's mom died a few days ago. he was and"atheist"... too many signs given to him right when, during, and after his mom passed.." I never said what he thought, just the coincidences at the time.. I had signs too when my dad passed... HE WAS THE ATHEIST.!! Dad died years ago,,,, but these 2 people dying reached out to LO's.

Imagine that.....2 people ...both dying. one who believes and one who doesn't ..giving signs to their living loved ones,.... one who believes and one who doesn't..

??? WHAT??? YES... WE ARE LOVED.... Life carries on..

If I were asked: What Do You Want For Your Self?

I PERSONALLY DO NOT WANT TO LIVE... I DO NOT WANT A VENTILATOR. I DO NOT WANT TO BE ARTIFICIALLY CONNECTED SO MY BODY WOULD BREATHE.

I DO NOT LIKE GREEEN EGGS AND HAM, I DO NOT WANT TO SURVIVE ARTIFICIALLY... SAM I AM. !!!

I DO NOT WANT MY KIDS OR WHOEVER ELSE THINK THAT THEY HAVE TO VISIT ME WHERE EVER THEY PLACE ME.

I do not want to put my kids in this.. family or not.....
Please accept my apology... My Thoughts Are Mine alone on this text ... I Don't want people to take care of me..I know how it is.. my kids will not want this...They have had enough..... It Is OK ...
If I go first before my spouse... ok, it is up to spouse to see what the future holds. I hope spouse does not want to keep on... keeping on artificially....

If I go after spouse... and I am secluded somehow medically, then I do not want to survive... I actually have no one but my immediate family, ; and I do not want them to artificially keep me breathing..... It is not fair to them... :( .

SO DNR.. IS MY ANSWER... DO NOT RESUSCITATE...And that is fine with me.

And so this is my response to cremation or burial... I DO NOT CARE.. I WILL BE DEAD... Do as you please, I love my family. And they have life too.... I hope I will be in their hearts ..Love is all that matters...

I should probably add that my father was told more than a few times that he would never be "decannulated", or that he would never live long enough to survive the intubation.

 But I did my research, interviewed more than a few home care teams, and was lucky to find one that with a speech pathologist who was responsive to my intents to find a better solution than life on a PEG tube.  

Sometimes people have to be convinced not to give up, and in some cases, that applied to the med pros more than to us.

I do have experience.   Due to multiple complications, my father was intubated and medically induced into a coma.    I learned that trachs should normally be done after about a week or so; apparently there are issues with remaining in an intubated state for much longer.

My father's ear/nose/& throat doctor told me he had waited a few more days to determine if the ventilator could be removed, but that wasn't the situation.

So a trach was done, and remained in place for another several months.    Dad first went to a long term care hospital, Select Specialty Hospital (I think), which rented space from St. Joseph's Mercy Hospital.    At that time, Medicare had a limitation on stays, and if the patient decompensated and had to return to a "regular" hospital, but still needed a long term care hospital, it could NOT be the same one from which he came.

So when he developed MRSA and went back into an ICU, when he stabilized, I had to find another Select Specialty Hospital to continue treatment.    That was challenging. 

Being on a trach requires regular respiratory treatment to clear fluids (an unpleasant and uncomfortable procedure done only by a respiratory therapist or pathologist).  However, it does allow a patient to recover and maintain regular breathing.  

I would never have "pulled the plug", and am glad I didn't.  Eventually Dad was weaned from the trach, it was removed, and replaced with a PEG tube, through which he received all his nutrition - only liquids.

After being discharged from 2 long term care hospitals, he came home, and we worked through the liquid nutrition issues together, along with support from PT, OT, nursing and a speech pathologist, who prescribed Shaker exercises to strengthen his throat muscles.

Eventually, about 10 months after the initial intubation, the PEG tube was removed, and Dad resumed eating normal foods.

However, years later a speech pathologist told me that the long intubation might have affected swallowing muscles and contributed to dysphagia.   But I've learned that dysphagia can occur with older people who haven't been trached. 


Coping mechanisms:   we discussed learning sign language, but I created a pictorial board with drawings of various things Dad might need, such as blankets if he was cold, message to church people, etc.    Until he could speak, that board and a notebook with a pen tied to it (otherwise it disappeared when the nurses came and moved things) was his only method of communication.

You are facing a challenging situation.  If I was in your place, I would discuss with his cardiac surgeon the specific nature of his lung damage, and whether or not it would be anticipated to be permanent, or terminal.   

If it's any consolation, that was about 15 years before my father passed, at age 99.5.      Dad continued breathing on his own, living a normal and active life, although in his later years he did need oxygen supplementation.

If you have any more questions, please feel free to ask.   I won't deny that this was probably more challenging than my father's end of life months, and it was exhausting for me as well since it occurred only a few months after my sister died. I had 3 houses to take care of and at one point was so exhausted I slept through the scheduled PEG tube feeding.   

I hope my experience helps you find peace in whatever decision you make.

Joy, i too was hoping to hear your DH had improved. The only experience i have concerning a vent was my 90 yr old grandmother. She got pneumonia while in rehab for right side weakness after her dr gave her diuretics and didn’t give potassium.....anyway, they took her to er and she was admitted to icu on a vent. The dr explained to me that they wouldnt leave her on it more than 14 days, and i, as her POA had to make the decision to take her off the vent and let her go, or they could do a trach, with no guarantee that would help her. I knew what her wishes were so thats what we did. A very difficult decision even tho i knew its what she wanted....
i sure hope he can be weaned off and gets better. Yall are in my prayers daily....Liz

Would it be possible for DH to be visited by someone older who has had a tracheotomy? Although you both wanted a quick unexpected death, without the operation this looks like quick but unfortunately not really unexpected. It might help if DH could feel that he was deciding whether he wanted the life after the operation, rather than whether he is ready to die immediately when his time on the ventilator runs out. I do hope that you have as much support as possible – this is so hard.

Ahmijoy - I am so sorry you and hubs are facing this. (((((hugs)))))

My great-uncle (Grandma's brother) had an emergency trach following a farming accident when he was in his 30s. He wasn't suppose live for a while, then he wasn't support to be able to farm again, then he wasn't suppose to be able to speak... my earliest memory of him is coming up Grandma's driveway on a big red tractor, jumping down from its high seat and asking me what made my hair so curly; he would have been in his 60s by then. He wore a gauze square over the opening and a scarf around his neck to prevent dust and stuff from entering his lungs. His voice was raspy but he had taught himself how to push enough air over his voice box to talk. When he wanted to yell he would use his hand to push against his throat so he could get more air through the voice box. My uncle had his miracle and came back to live a full and long life, but he was in his 30s when injured, a healthy man doing physically demanding work and no other health problems.

I'm sorry Joy, but that's all I know about trachs beyond a couple of people with ALS. One was on Medicare but I have no idea if he had supplemental insurance or used Medicaid.

I suggest you ask the hospital SW to identify what skilled nursing facilities would be available for DH if he requires a trach. Knowing whether there will be one available close enough for you to easily visit will likely be a factor in DH's decision. Maybe ask the doctor if DH will be able to use an artificial voice box to speak again after a trach?

I'm so very sorry you and DH are facing this crossroad. Remember doctors are not God; my father had three pretty good years more than the heart doctor thought was possible. I will be praying for you both.

I am so very sorry to hear of this. I have no words of wisdom, as you have said, it is his decision. Sending support & hugs your way.

What a tough decision ! Can he communicate ? If he is rational and can communicate, it’s really his decision.
You need to speak with the doctor or social workers also about what the costs of keeping him alive on a ventilator will be. If I were in this predicament I’d NOT want to be kept alive via machines. Find out what will be the quality of his life on a permanent respirator. I know nothing else about his condition, but there are many factors to weigh. The main one being what kind of life he might have, and how he feels about living that way.
Hugs to you at this tough time.

Ahmijoy,

I am so sorry to hear this. Hoping for the best circumstance for your husband. Many hugs.

I am so sorry. This is so hard. I feel exactly as isthisreallyreal. I would be most concerned about how he feels at the moment because it truly should be his choice. That is where you need to start. Have that discussion with him and that will help determine the steps following.

I wish you and your DH the best possible outcome. A bazillion hugs.

I just want to say that I’m very, very sorry that this happened. Sending a hug your way.

Ahmijoy,
A miracle is what is needed, yes.
I am not sure, but is it possible to have the doctor order hubs to be 'weaned off' the ventilator in the next few days, expecting him to breathe on his own?
I offer this as an instead of deciding to pull the plug.

Can you get a second opinion about his physical ability to do this and succeed?

I have no personal experience with this, but I have heard that people do breathe on their own after the life support is discontinued.

So sorry that you are going through this.
Yes, a miracle is needed.

Sending prayers your way that you can reach a decision in such a difficult situation. I was so hoping for better news about DH. I'm so sorry you're facing such a traumatic choice.
Big hugs to you, my friend.

Oh Joy, I’m so sorry things aren’t better. Been hoping to hear hubby was improving. No trach experience to offer. I know how important it’s been to you both for your husband to be cared for in your home, I wonder if the change to a nursing facility would be an adjustment he’d want to make? I have no answers, just know you have some hard heart to heart talks to have now, and you’re in my heart and prayers as you walk through this

My uncle was switched from the temporary kind to a tracheotomy and permanent ventilator. He had fibrotic lung disease. He was transferred to the skilled nursing unit at the same hospital. It was a separate wing from the rest of the complex. He was in the unit for about a year. His health insurance covered until he reached his lifetime limit. Then he was private pay. I don’t know if they accepted Medicaid.

Have you guys ever talked about end of life decisions?

If he can understand then the decision is his alone to make.

Best of luck, I am so sorry that you are facing this. Hugs!