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JennAudrey

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Hi everyone! I'm new here, but my dad was diagnosed with ALS in March '16, and had been showing symptoms for maybe six months prior. His progression seems to be moving pretty fast, as he is using the bipap and sip 'n puff now, and has some movement left in his lower left arm and head/neck, but is completely dependent on caregivers for transferring and ADL. He has had a pretty rough go for the past three months with catching colds and developing infections from them.

He was adamantly against a trach/vent situation and we wrote his living will as such. After this last illness (which he is currently still fighting) he's thinking maybe a trach for secretion management isn't a terrible idea. I'm fine with whatever he chooses, but is it possible to have a trach for secretion management and not have the vent? He absolutely needs the sip n puff and the bipap to keep his O2 levels up on the 90s, especially when he's sick. He also uses suction and the cough assist, as well as a peg tube because he can no longer swallow without choking.

He comes to me with a lot of these things, and my intellectual side battles with my heart... I don't want him to be uncomfortable, but I know he will have a hard time deciding when enough is enough if he ends up on the vent, and I don't want my mom to make that decision (and by proxy, me, because I tend to be the one who gets asked).

I guess I'm just wondering if doing a trach without a vent is even a thing one does. His pallative care nurse doesn't promote trachs in ALS patients, and his neurologist hasn't said much as he's only been on NIV for a couple of months. Honestly, I don't know that he'll survive the procedure.

Any help, advice, stories, links are helpful... I need to talk with him soonish about it. Thanks for reading my rambling too... I'm doing much of this from 900 miles away in grad school.
 
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lgelb

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Hi, Jenn, yes, a couple of people here are doing trach with BiPAP rather than invasive ventilation. I believe Sharon (PittsburghGal)'s husband is one. You are right that once on invasive ventilation, there seems to be a bias against coming off it for some people, which can be traumatic for all.

Before he considers either one, I would make sure all paperwork (advance directive/living will applicable to his state, as you mentioned is done but maybe obsolete?) health care power of attorney, regular will/financial power of attorney) is done.When all of you are clear as to his current wishes, you or your mom, whichever one of you will find it easiest to implement them, should hold his health care power of attorney, with knowledge of and consent to what that means.

And I would talk, the three of you, as to what "life worth living" means to him. For example, if he is bed-bound, on BiPAP 24/7, is that OK if he's comfortable? Or does he view life as over when he can no longer transfer? Things like that.

He can still change his mind later, as it sounds like he may have already, but it may help to lay out some ground to start. If his team is not familiar with the latest respiratory support options, he may want to seek a 2nd opinion. Where does he live? Someone here may have a pulmo suggestion.

Best,
Laurie
 

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I may be wrong but I think the question is about using the trach for secretion management rather than for a vent. If so the answer is that yes, this is reasonably common for PALS to do.

May I ask, how is a trach with a bipap machine not invasive ventilation? I was under the impression invasive means a trach as the mode of delivery whereas using any machine through a mask, nasal pillows, sip n puff etc is non-invasive?
 

lgelb

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Invasive ventilation is pretty much by definition full-time. Part-time BiPAP as Sharon's husband is doing is not invasive since the trach is not necessary for air exchange -- it's not keeping him alive. As you say, it's being used for secretion management.

There is also a thing in the States, Tillie, where only the Trilogy, Astral and other portable machines with certain features are considered/coded as "ventilators" as opposed to BiPAP even though they can do BiPAP. "Invasive" [life-sustaining/24 hr] ventilation and "non-invasive ventilation" sort of grew up around the coding issues even though of course many PALS can be "sustained" for some time on 24h BiPAP.
 

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is it possible to have a trach for secretion management and not have the vent? He absolutely needs the sip n puff and the bipap

My wife has a trach for secretion management but does not need a vent. Basically she can breathe but can't cough, and suctioning the trach provides a lot of comfort. She had been prescribed BIPAP for use while sleeping. Because BIPAP employs a mask, it is noninvasive ventilation. After she got the trach, she was advised the mask was not needed due to her new artificial airway and the Trilogy BIPAP settings would be replaced with settings for invasive ventilation. (I still don't know the difference between the settings.). Connecting the Trilogy to the trach is way, way more comfortable for her than the mask was. So now she uses invasive ventilation at night for all the reasons BIPAP is prescribed for palliation (better sleep, more daytime energy, etc.). However she does not need the vent to breathe and does not want to be on life support. Bottom line: yes, invasive ventilation can be part time, but I don't know how many PALS have vents that they don't need in order to breathe.

The first 2-3 months after the tracheostomy were pretty rough and required major adjustments to full-time monitoring for tracheal suctioning. Knowing about this recovery and adjustment period was a big factor that had to be considered. I also anticipated that her hospice would try to discharge her under the mistaken assumption that tracheostomy = ventilator = life support. Another factor to consider is who will provide all of the 156 hours per week of monitoring for trach suctioning if the patient is unable to suction himself? This is not an easy thing to arrange and manage, but it can be done, and I have a strong and well-founded conviction that this is basic health care that should be provided at home by a patient's health plan if family is not available for all hours of necessary care. (It would take way too long to explain the medical and legal reasoning for this, but that is how my wife ended up with 16 hours per day of in home nursing from her hospice.)
 
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lgelb

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You're right, Dave -- I should have noted that the most basic definition is that a vent is hooked to a trach (invasive ventilation) or a mask or other interface, like a mouthpiece, is used in "non-invasive ventilation."

Pragmatically, "invasive ventilation" is most often 24/7 because that's more often the reason for a trach. However, in conditions other than ALS, it can be temporary due to illness or injury.
 
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You're right, Dave -- I should have noted that the most basic definition is that a vent is hooked to a trach (invasive ventilation) or a mask or other interface, like a mouthpiece, is used in "non-invasive ventilation."

That's what I was asking about - I had always thought invasive ventilation was about the fact that they are ventilated invasively - ie through a hole in the throat, rather than non-invasively through a mask or similar.

I had noted that there was different coding for the different machines there.

This is how I have always understood the difference:
"Noninvasive ventilation (NIV) refers to the administration of ventilatory support without using an invasive artificial airway (endotracheal tube or tracheostomy tube)."
 

lgelb

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Right, NIV is that the "vent" [let's just call it a positive pressure room air source to get past the coding] is not hooked to a trach, but rather to a mask, mouthpiece or something else.
 

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Thanks Laurie, that was a very long convoluted way around to saying that yes I had the definitions right to start with ... :confused: :confused: :confused:

So sorry to the OP. As I did post, I have heard of quite a number of PALS who elect for a trach purely for symptom management of secretions.
 

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Hi,Jenn.

As Laurie noted, my husband, Frank, has a trach and is only on BIPAP at night. Having the trach is beneficial as far as suctioning. He is having greater difficulty handling secretions now and I can quickly suction him and make him feel better. I think it is also easier to use the BIPAP by attaching it to the trach rather than using a mask.

I do not know whether he will decide to go on the ventilator when that becomes necessary. I have repeatedly asked him what he wants and he tells me he has to think about it. I think he is hoping that the decision is taken out of his hands and that I will have to decide, which makes me very uncomfortable.

Frank had the trach emergently placed in July 2015 when he fell and had serious head injuries. He developed aspiration pneumonia and would have died without it. At this time, he was able to walk, talk, eat and only had arm weakness so my daughter and I made the decision to have the trach. This has given us many more months of life but now I think his quality of life has so deteriorated that I really can't see why he would want to prolong it. I only wish he would tell me what he wants. This is an unfair burden to put on a CALS. He also refuses to discuss any funeral plans and tells me to do what I want.

Sharon
 

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I only wish he would tell me what he wants. This is an unfair burden to put on a CALS. He also refuses to discuss any funeral plans and tells me to do what I want.

I don't know what works for others, but here is what I have done: first and foremost, I have kept my eyes and ears open for opportunities to talk with my wife about her wishes when we have plenty of time and aren't expecting visitors and when she doesn't seem occupied with other things or appear in any way depressed. These opportunities have been very few and far between. Then I take out a "five wishes" form (https://agingwithdignity.org/docs/d...library/product-samples/fwsample.pdf?sfvrsn=2) and read it aloud to her and ask her what changes she wants me to make. When we're done, I read the whole thing to her and ask her if it says what she wants it to say. Then I keep it where I can always find it if I ever have any uncertainty about her wishes. Every few months I repeat this to see if her wishes have changed. It makes everyone's life much easier knowing what her wishes are.
 

GilWest

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Trach for secretions is a slippery slope...
 
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