What now?

[Bestfriends14]

My hubby was told it's too late for him to get a feeding tube; his breathing is too poorly at this stage. So, then, what now for him? Does he get MAID? Get pneumonia and pass that way? Is it more kind to not have one more thing that is the difference between life and death?

When my hubby was told this, I dont think it registered fully with him, as he just shrugged his shoulders. Honestly, though, his breathing is so bad and he's pretty much a quadriplegic. We are going down to Palm Desert from September 21 until January 7th. If the time ahead of him is not much more, then I'd like to make the next few months special for him. I'm not sure the point of this post, but given this information, I wonder what his prognosis is? We just spent an hour getting phlegm up and we're still not done. That's not good either. I'm tired

 

[Jimi]

I was on bipap 24/7 unable to breathe on my own for 3 years and paralyzed from the shoulders down. I was able to get a trach and feeding tube at the same time. I'm not sure why it's too late

 

[lgelb]

I don't know where he got this opinion, but different hospitals have different feeding tube protocols. Some ms report successful procedures at 17% FVC, for example. The more important question is whether he wants to go on with life or not. If so, I'm sure you can find an interventional radiologist in Cali to do the procedure.

There is no need for MAID either way. It is natural to eat less, and morphine to reduce air hunger is standard at the end of life. He can pass very peacefully with a little forethought.

Re phlegm, are you using a suction machine? Cough Assist? Warm liquids? Pineapple or papaya juice?

 

[Bestfriends14]

I'm not sure why the pulmonologist said what he said. Wayne has said before that he doesn't want a feeding tube, but if push comes to shove and he can get one, he may change his mind. I believe his FVC is lower than 17% , though. We won't get any procedures done in Cali because we would have to pay for it, and if he does change his mind and wants a tube, and it's possible, we'll get it done in Canada. Mentally, he does so much better in California. It's his happy place.

As for the phlegm, we had all guns firing this aft. Warm water, pineapple juice, cough assist, and breath stacking. We were silly with lunch and that's what caused the phlegm. Wayne had butter chicken and naan dripping in butter. Both his favourites, but it looks like he'll have to get vegan from now on. The good news is, after three and a half very exhausting hours, he got it all up. Phew!

 

[affected]

TBH getting a feeding tube at the very last minute because push came to shove is possibly truly not worth it. If he has decided he doesn't want a tube, is there some reason it is being brought up at all?

 

[Bestfriends14]

His bulbar region is involved, but he has yet to choke on food. His speech is really slow and slurred when he's not on his trilogy, and he often aspirates on liquids. Plus, we were just at the clinic last Wednesday, and it was brought up then. Of course, I'm really good at ruminating so that's been on my mind ever since.

 

[affected]

As a CALS, I think we go over these things more in different ways to how our PALS do. Really thinking of you both, there are no easy choices in any of this of course.

 

[lgelb]

At some point or as a supplement, thicken his liquids with corn starch or flour? Do shakes with nut butter or eggs? Pureed meat/fruit/etc? Even a pretty cheap Ninja can work to make a lot of food easier. I would stay away from dairy, as you say, but oat milk/ice cream/yogurt shouldn't trigger phlegm to the same extent.

 

[bhg]

Sorry. My eyes flickered after putting a like on Tillie's post causing the other inappropritate one to come up. Having problems with eyes today.

 

[Bestfriends14]

We had another 4 hour cough assist session yesterday afternoon. He's not had to use the machine in 9 days, and the reason for the use this time was that I fed him a bagel w/ cream cheese and he had half of a Pumpkin Spice cream cold brew. Can this little dairy affect the mucous this much? It was exhausting for all involved.

Now that he's used the CA twice in nine days, I wonder if it's safe to go down to the States for four months? At this stage of the disease, I have no idea what to expect. He eats no problem (for now), but what frequency of usage of the CA do I need to start being worried and come back? Our winters are so long and cold that I would hate to bring him back only for him to sit inside for months. The pulmonologist and SLP didn't seem concerned about our timeline, but they are new to us and I feel like we're getting less fruitful information than from the old respirology team.

I seriously may lose my marbles from worrying so much. It's been 5.5 years and I'm emotionally pretty wrung out. If there are PALS out there (AL (s) or SWalker) that can chime in, that would be great. My hubby is on NIV 24/7 except when eating or showering.

 

[lgelb]

Bagels can have hard morsels, and cream cheese can be clingy even apart from its being dairy. I don't see that there is any reason to bring him back at any particular CA use level, since he loves the desert so much, but with some forethought on diet, CA's role can be minimized.

I guess what I'm saying is, I wouldn't let inability to see the future interfere with the respite he loves. If things played out in Cali, what would be the harm (apart from logistics that I'm sure you could handle)?

For eating, he can use a nasal mask, and for showering, he can use a mouthpiece rather than a mask, if either scenario comes to that.

Best,
Laurie

 

[Jimi]

I was on NIV 24/7 for 3 years prior to getting a trach and feeding tube. I know exactly what you are talking about regarding long cough assist sessions. Just a few tiny bits of food in the lungs can take all day to finally get out. Things with crumbs could be a problem. I ended up buying a mini food processor. Almost anything could be eaten then. Sometimes instant mashed potatoes or yogurt had to be mixed in to get the consistency right. For things that are sticky we added butter or gravy. I finally got to the point where I couldn't safely eat and protect my airway. The trach and feeding tube solved the problem. Using the CA with a trach and inflated cuff works great with no issue. I miss eating, but compared to the long scary CA days with food in my lungs, it is an improvement! Also when eating it became critical to get my head position just right. Head tilted to far back was guaranteed to get food down the wrong tube . I never really ate KFC, but their mashed potatoes and gravy can be put in the processer and mixed with almost anything and it goes down easy

 

[Bestfriends14]

Thank you, Laurie. It's difficult to see the forest through the trees when there are such deep emotions involved.

Waynes pulmonologist basically said the same thing- there's no point in Wayne sitting in Calgary when we have a home in PD, as PD is Wayne's happy place. I really find the whole CA thing traumatizing, though. However, I better get used to it seeing as it's a part of our lives now

 

[affected]

It makes sense to me that the issue with the mucus could be more that a few crumbs or something were aspirated. This sets up an immediate reaction by the body to try and clear, including lots of mucus to help get it out.
It may be worth a discussion on things like blending certain foods to still get the taste, but I know that for Chris it was the loss of eating texture that he found hard to let go.
Also a discussion on the plan if things go awry when away, so that you feel you know more about how to handle situations.
We can't control what situations will come up with this b@st*!d disease, but we can have strategies mapped out.

I just want to add though, that my Chris was rapid progression, I can't imagine being on this high alert for such a long time.

 

[affected]

bizarre - I got a double post, the forum used to prevent that happening. sorry