Trach issues

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Weltschmerz

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Unfortunately despite having a feeding tube surgery scheduled for tomorrow, my PALS ended up in hospital last week due to a variety of complications. Since then, she’s deteriorated rapidly and today had to be intubated due to oxygen levels crashing following a pneumonia diagnosis. I wasn’t there as I’d gone home after a very long stay, but our main caregiver was and described the situation to me in detail. It was only on Monday that the medical staff raised the issue of a trach, asking for our views. Even yesterday the consultant neurologist literally said to me the decision wasn’t required in the next day or so, but likely by the end of the week. Before all of this, my PALS and I had had discussions in which she expressed a preference for a trach, though without knowing all of what we learned on Monday. (For example that as a trach doesn’t stop ALS progression and my PALS has already lost all limb function and swallowing, they can’t rule out the eyes being impacted.) In addition we live outside our home country and did not know there was no support offered. That gave pause for thought but with only one day between the conversation and now, we didn’t re-explore it. Now I’m hoping the intubation is successful and we have a little time. But it’s all brutal and we don’t have firm plans or thoughts. I’ve looked up some trach posts here but people seem to have experience earlier in the process. At such an advanced stage of the disease I’m not sure there is much experience...is there?
 

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I'm so sorry that happened this way, so fast and sudden for you!
The experience at this stage is not always a good transition to the tube, but it is so variable that it's really day at a time stuff. I wish I could be more helpful, but I have known PALS with emergency trach to then live on a long time at this stage, and others who suffer infections and other complications.
You are in my thoughts indeed.
 

lgelb

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We have some P/CALS who can speak to trachs that were placed late in the disease. I am sure they will chime in. Your learnings from Monday are correct, so this is where you will really want to understand the care that a trach requires, the kind of life that can be expected, and document what support you do or do not have, from any source.

You do not want to make that decision under duress, so I would work on that straightaway. If her pneumonia is severe, you may be called upon to make a decision in the moment. You can't rely on the timetable they're guessing at. I take it she is receiving antibiotics?
 

Weltschmerz

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Yes, she’s receiving antibiotics and is heavily sedated. They hope to wake her up today and if that’s successful we can hopefully consider our options with her using her eye gaze to communicate. I really didn’t understand all of the limitations of a tracheotomy until the discussion on Monday, and I know my PALS didn’t either. Until the morning of intubation they thought it was “only”bronchitis. We thought that was the first good medical news in a year so sat back and relaxed together a little. In any event, now it’s all super tricky and I’m quite nervous about the necessity of a decision. For the moment the intubation is in place so I’m hoping we buy a little time. Her parents are (separately) flying over from the US today and Saturday. Thank you both very much for the response. This forum has been such a source of support.
 

jonico

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Hi Welts...

As you are already experiencing, it is very complicated. You may have already made your decision but I thought I would share a little of our experience. My wife got her trach a little over two years into her diagnosis. That was about three years ago, and we've been able to make it work. That being said, she was a very healthy woman other than the ALS and relatively young at 52 when trached. She was able to do it electively after two aspiration pneumonia hospital visits in two weeks. It was still a pretty tough go for a while after the operation.

She was almost entirely incapacitated at the time of the operation and has been relatively stable since. She has been able to enjoy a fulfilling life of sorts (does still get outdoors for outings of some sort most days), although dramatically different from when she was well and very active. Her eyes still work quite fine and she communicates nicely with her Tobii Eye Gaze. She can't do that for too long each days, as her eyes get tired. Both of us are glad she went with the trach, but we are at a point where she could well live several more years and I am feeling pretty burnt out...so something has to give at some point.

I can't begin to understand your situation there in Brussels...how you will afford it, how accessible your home is, what kind of help you will have. I wouldn't advise someone one here in the states to do it or not to do it. It is an extremely personal decision. Please understand that since your PALS has lost all limb function and swallowing, like my PALS has, she will may well need near constant care and attention. You'd be super human to do it all yourself.

I'm sorry you both are in this situation and I hope you are able to gather some good information of how it can work there in Belgium so you can make as educated a decision as possible and have some peace about it. Hope this note helps a little.

All the best!
 

Weltschmerz

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Thanks, Jonico. Lots of good food for thought there, especially as most medical professionals don’t have much experience with a trach + ALS combination. My wife is also almost entirely incapacitated at the moment, also with eyes working fine, but I was concerned to hear that things could still progress further. We are still working to gather information but your experience here and on other posts is helpful, thanks.
 

Weltschmerz

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Well after a week of intubation, the tube was removed and ultimately reinserted after 24 hours due to increasing secretions in the lungs. We continue to find it difficult to have a meaningful conversation about the tracheotomy and consequences etc., in amongst these acute issues. I can only recommend getting into the trickier stuff while it’s abstract...
 

jonico

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So sorry friend! That is very good advice, but certainly understandable you didn't get to it with all you have going on and such fast progression.
 

Weltschmerz

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An update to say intubation continues but not for much longer, so a trach decision is imminent. My PALS is tending towards favouring a tracheotomy, though with some wishful thinking (or is it faith?) about quality of life thereafter. I don’t want to break her spirit and entice or induce a lack of action, but I remain concerned that the implications are perhaps not yet fully understood. Before this intubation, my PALS had no leg or arm movement, no head movement, and had just lost swallowing and talking a few days before hospitalisation. She has had a PEG since being in hospital. I can’t envisage a calm future against this backdrop, even with a tracheotomy. Am I too negative? Rightly cautious? I’ve read older posts on this forum about tracheotomy issues but I can’t tell whether PALS have generally lost as much as mine has pre-trach.
 

lgelb

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I would presume that your PALS is about the same as Jonico's wife in terms of motor function, that basically only the eyes work in terms of voluntary movement for communication. That means to communicate, she would likely need an eye gaze setup. Has she tried one? That would be pretty critical to her quality of life, I would think.
 

Naturelover

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I am so sorry for what you are going through. My stepdaughter, 52, was diagnosed in Nov 2018, and declined rapidly. She was trached in July. She could still write at the time, but lost that by early October. She is completely paralyzed other then very minor head control. She uses eye gaze. She has QoL by her standards, spending time with her 15 y/o boys everyday. She doesn't get out much as it's so much effort. We have 24/7 care that we, her parents, pay for and I'm a constant care manager. This is an extremely difficult decision to have to make in the moment, and personally, nothing prepares you for the reality. The trach was stabilizing in that the fast downhill slide of lost motor function and breathing came to a halt. Not much left to lose. So as long as she stays healthy otherwise, my PALS could live for a number of years. Caregiver burn out is very real. I hope you and your PALS have an opportunity to talk about all of it. God bless you and give you strength
 

Atsugi

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Weltschmerz, (excellent screen name)

I wish I had uplifting words or some factual data that would brighten your day, but all I can do is relate my own limited experience.

I have had email correspondence with PALS who were able to use an Eye Gaze apparatus to surf the web. One PALS told me she consider her quality of life to be good, all things considered. But when the PALS can no longer communicate, of course, no one knows what their life is like.

My wife tried eye gaze, but it was difficult to use. You must play with it for quite a bit to get the hang of it. And the sensors must be placed exactly perfectly each time it is used.

My wife's ALS moved faster than yours. Nine months from first symptom to passing. As long as she had the ability to blink, she did not complain. She had several emergencies with breathing that we quickly fixed for her.

She refused all tubes. No PEG, no trach, no IV. She also told us in advance, in writing, that she wanted no life saving measures. If she went into "air hunger," we were to give her morphine, not oxygen. This we did a couple of times.

She asked for a catheter because I kept spilling the urinal.

One morning, her eyes could no longer blink. There was no way to tell if she was in pain. She could not respond to the letter board or even tell me "yes" or "no." I spent that day putting eye drops into her eyes to prevent them from drying out, which would be painful.

She passed that evening.

If she had a trach and a PEG...I can't imagine what our remaining lives would have been like. How long could she live? If she decided to end it all, how would we know?

My only two words of advice are these, and they are only my opinion, which you may certainly reject if you wish:
1) I believe the PALS should get whatever they decide, and be supported without question, even if we think they are not deciding the right thing.
2) The CALS must consider quality of life, not only for the PALS, but also for the surviving family. After she's gone, you all still have to get back into regular life. Any decisions you make should also consider the sacrifices of the rest of the family, including yourself. ALS is certainly going to destroy one life--don't let it destroy yours, too.

Good luck, Weltschmerz. I give my respect to you, sir.
 

Weltschmerz

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Thanks to you all for these comments. Yes, it’s only eye function that works now. Fortunately, my PALS has had a Tobii eye gaze for a few months now, since her arms stopped working. She used the tablet/Tobii to keep working until just before going into hospital. She enjoys using the “regular” internet, sending WhatsApp messages, and watching YouTube videos and series on Netflix. When I’m not in hospital with her, we message and I can’t quite get over how ordinary a message appears on WhatsApp, now I know the effort involved to produce it. So communication is pretty clear, and her mental state is lucid and fairly ordinary. All of this of course relies on being able to blink and use her eye muscles to reach each part of the screen. Any notion of losing that terrifies me as the CALS, even if she is able to park that thought to keep going.

Just for additional background, my PALS has been dependent on the Trilogy machine 24/7 since June, and we are now at 13 months since diagnosis. By and large she derives a decent QoL (in her own view) based almost exclusively on having the Tobii eye gaze and computer that opens up a world of internet options. However, for me it’s hard to watch the suffering that goes around that QoL, and if I’m honest also hard to consider the detrimental impact on my own QoL this past year and to come.
 

lgelb

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There is her view on her QoL, and there is yours on yours. It is very difficult for a PALS and CALS to align on the other's quality of life. One is immobile, the other is not.

You owe it to both of you to talk frankly about what your lives will be like if her life is extended indefinitely, and, as we discussed before, how much outside support, if any, you will have. As others have said, without outside support, it is a very hard road. That does not mean you should not take it, but it should be a very conscious and informed decision, made in partnership.

For some here, infections and other complications have kept that particular journey from lasting a long time.

For others, the journey has outlasted their ability to deal, with some taking steps to end it, and others simply awaiting death.

For others, such as Jonico's wife and Naturelover's stepdaughter, the trach seems worthwhile, although as you have read, the CALS will always have a different perspective.

Diane Huberty is a nurse with ALS who has had a trach for a long time, but she still has some movement so it's different for her. In the page I hyperlinked, she points out that before undertaking a trach, a legal framework for what happens if the PALS becomes unable to communicate, should be in place [as it should be for all PALS].

As you say, a PALS' ability to use eye gaze may end at any time. The technology beyond that, like "thinking" actions via computer interfaces using attached or implanted devices, is promising, but not as yet available at scale.
 

jonico

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Naturelover nailed it and lgelb offered great insight to consider (check out Braingate. I believe eyegaze technology will be a thing of the past in the not too distant future). It seems your wife is younger than both mine and Naturelover's stepdaughter. It is very possible your wife could live reasonably comfortably for quite some time.

A couple things to consider...

My wife wanted the trach and there was no way I could say "no, it's going to be too hard for me" (In actuality, I was somewhere between fully supportive and scared to death of the prospect). I knew I couldn't live with having essentially unilaterally made that decision. That was my personal experience with the decision part of it, for what it is worth. That left the only question being how are we going to do this? That was pretty daunting, but has been doable.

Also, regarding communicating with the eyes, I can't imagine her eyes would go so quickly that she couldn't communicate wishes to bring hospice in if communicating with them becomes untenable. My wife's eyes are very gradually weakening. We also don't use an eye blink method for communicating when the Tobii isn't in front of her. She looks toward us for yes and to one side or the other for no. We find it much easier for everyone to understand than eye blinks, and we are sure it is less tiring for her as well. She can also tell us a lot by looking in various directions for various needs, and uses a basic alphabet sheet - looking at, or away from us for selecting letters. The other side of the letter sheet has boxes of common requests in rows.

Hang in there!
 
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