back in the hospital.......

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Ronnie& sissy

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hi all just wanted to update you all; we had to come back to the hospice hospital, symptoms got out of control again.... just couldnt manage at home.. hopefully we can do adjusting and be ok again...... just praying, and praying!
we were giving 20mg of moriphine every hr. and before the hr was up he was needeing more... dr. said we can try 20-30 every hr and see if that helps,
I gues i was just wondering if any of you had experienced this and if its any kind of indication of how things are progressing..I mean i know they are, but at this rate? was wondering how long can he really do this for...
also, "in the end " how much was your PALS taking?(moriphine that is)
thank you all.
 

affected

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Hi sissy, it's good you have him in there if you don't feel you can manage as they can help you get to a manageable place again.

The amount and frequency of morphine is a very individual thing. So many influences - the body weight, the amount of pain or fear that needs to be dealt with by the meds, how well the breathing muscles are working, and their tolerance to it.

Yes, as time passes they will develop some tolerance and so may need the dose increased a bit because of that alone. But also they may simply need more as things progress.

There is a balance somewhere as morphine does depress breathing, however it also actually makes breathing easier in small frequent doses when they are anxious, in pain and tense.

20-30mg is a small dose, but every hour is frequent so he is receiving a reasonable amount of morphine over every 24 hours. I personally believe that comfort is the key, and counting the dose and holding back in fear of giving a bit too much is worse. The important thing about doing this is to stop the symptoms reaching a high level. It is harder to relieve someone of pain than it is to keep the pain controlled. More morphine is needed if his symptoms are allowed to build up, so smaller amounts more often are actually better.

Chris only started taking regular Oxynorm which is similar to morphine in earnest in his last 4 days as he always resisted taking anything. He was taking a tiny 5mg at night for some months before that. I was increasing the dosage amount or the frequency (on doctor/pall nurse advice) every half a day or so. I think in the end he was having about 30mg every 1 -2 hours, but he was also having clonazepam either with the oxynorm or between oxynorm doses. I wasn't really following any set regime, I was just going by how Chris was doing, though I never let him go more than a couple of hours between doses of anything so that he did not get into any distress.

Chris at this point weighed less than 50kg and was not taking in any nutrition. This will have a big influence on how much he needed, and the fact that he was always very sensitive to meds (and alcohol as he was never much of a drinker), and that we only used these 2 meds for 4 days.

I hope that helps settle your mind that it isn't so much a matter of how much should you give and when, as keeping him comfortable.

What symptoms are you getting that he needs the morphine to control - air hunger, pain, fear? Are you using clonazepam as well? The good thing with it is that it comes as drops and you only put them on the tongue so they are absorbed and working fast. We started with 1 drop every 4 hours or so, but by the last day he was having 3 - 5 drops every 1 - 2 hours. I never kept a chart record of what I gave him, but then I knew we only had days left.

What I can assure you is that he was kept very comfortable and had no fear.
 

Nikki J

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I hope he is finding comfort and that you are holding up ok. I must disagree 20-30 mg every hour is not a small dose. A usual dose might be 40mg in 4 hours. But it is a reasonable dose and when the goal is comfort for someone with a terminal illness the right dose is what works. There are many variables including patient weight and as Tillie says a tolerance can develop. In the hospital hopefully they can adjust the dose frequently according to need. Do find out how the order is written and if it is as needed make sure you keep an eye out that he is getting it in time to keep him from developing any distress
 

affected

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Nikki, please note I said it is a small dose BUT given every hour...
 

Ronnie& sissy

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Thank you Tillie, that does help tremendously!
When we were home, (after our last visit here) things were ok, he was doing good with the changes... then Sat. he had to go in and lay down early, and that was the last time he got up since. But we had to do a supository and the all the bm's started and that lasted till yesterday. (i think we refer to it as poop patrol) lol . anyway, then yesterday, we were having to use the cough assist and suction, and he could not do it, he needed his AVAPS on immediatly, then all the panic and stuff that foollows, so I did what i was told and gave 20mg. and after a little whie he calmed down, but then before that hr. was up he needed more.
he also gets a xanax every 4 hrs.
and before i could lay the cough assist down and get his mask on his lips would be blue.... which we are talking in the matter of minutes. So when the nurse came today, she looked at all my time entys and assessed him and did not feel safe leaving us at home so far away from everything all weekend. (we live in the country) By that time he was very lathargic and really not responding to us.... so then when we get in here, they gave him 20mg a little before 1 and he slept clear until 5, with no meds. So Im not sure if its just the saftey factor thats made him relax or just all the meds catching up to him... (which I did not think moriphine did, but the nurse on duty now says yes) but she also just told me she wished he would just go into acoma! can you believe that a nurse would actually say that, espesially when im sitting there bawling anyway! I think she ment it like she didnt want to see him suffer, but I really didnt need to hear that... more later got to run,,,, thanks again Tillie!
 

Ronnie& sissy

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oh sorry, what he is needing it for is the air hunger and fear mostly, with some pain in there. he has a steel plate and 6 screws in his neck.
 

affected

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Thanks for managing to give that much detail when you are in the middle of dealing with all of this and your distress Sissy.

You could be right, he may have just relaxed a little in the hospital, the next 24 hours will tell there. Morphine does build up, but just shifting him to the hospital may have worn him out too!

Do ask about the clonazepam instead of xanax at this point. They are the ones who are trained and are looking at him and may say xanax is better and that's fine. Just see what options you have on meds.

There is a huge difference between one of us going through this to say how much we don't want our PALS to suffer, and a nurse saying something that insensitive. I think they forget how insensitive it all is to say that to a wife. Not making excuses for her, just sayin ...

Ask questions of them, but go with your heart and your gut, you know way more about your own husband, ALS and what suits how you both want things to happen xxxxx
 

Janie H

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Sissy, you are in my prayers, it's hard when you don't know what to expect. I have no answers.

Janie
 

affected

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oh sorry, what he is needing it for is the air hunger and fear mostly, with some pain in there. he has a steel plate and 6 screws in his neck.
I know the clonazepam really worked amazingly on the fear for Chris.
 

Barbie

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oh Sissy, what a tough time you are going thru. I don't have anything to add as I know nothing about morphine or pain control...but I am sending my support to you and holding your hand while you walk this path. I do think the hospice in care can help get everything straightened with his drugs out so he doesn't have that stress. it is a lot to put on a wife with out any special training, thrown in a situation like this. you are doing the best you can and he know. hang in there and do not give up.

Barbie
 

lgelb

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Sissy,
I am very sorry.

If you two are going home again, at that point the BiPAP may be more important than suction/cough assist. It is now about comfort and if his lips are turning blue when off BiPAP, he likely needs continuous ventilation for a more peaceful journey, that most PALS prefer to make at home (but you can certainly ask that question directly if you have not). In Larry's final days, we did not turn off the BiPAP for any reason. However, we did gradually reduce the volume as his lungs could no longer tolerate what they had. Ronnie, however, may be in the opposite position. I would certainly adjust the volume to his needs, as well as target rate if the backup rate is tripping, and Ti min/max, triggering and cycling (the latter may not apply if you are using a Respironics machine).

Moreover, as you increase the morphine dose and adjust the BiPAP, Ronnie is less likely to feel mucus plugs. I would lay out both options (continuous BiPAP or breaks for suction/CA) in advance, before you are in the moment again.

This is the hardest road, Sissy. You asked about dosing and how much longer it will be. As others have noted, nutrition, other meds and history have a lot to do with that. You could also ask about how his SpO2 is trending, if you have not been using an oximeter. If there is family, friends he wants to see/hear by phone, things like that, I would not delay. This is the time for his favorite music, movies, anything he finds comforting. It may be time to shift your focus from how long he has to ensuring he passes well. There is still much you can do toward that, and you will remember how much you helped, always.

Ronnie is lucky to have you at his side.
 

affected

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Laurie, I am always SO grateful we have your expertise here with the use of bipap.

It's an area I can never really comment much on as we never used it. Chris finally said he wanted it less than 3 weeks before he passed and it was too late by then.
 

HeatherFeather

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Sissy, you and Ronnie are in my thoughts and prayers - HUGE hugs sent out your way...... ~ Heather ~ xoxoxo
 

Gembead

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Sissy, thinking of you tonight , sending you hugs and will keep you both in my prayers.
Love Gem
 

Ronnie& sissy

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Sissy,
I am very sorry.

If you two are going home again, at that point the BiPAP may be more important than suction/cough assist. It is now about comfort and if his lips are turning blue when off BiPAP, he likely needs continuous ventilation for a more peaceful journey, that most PALS prefer to make at home (but you can certainly ask that question directly if you have not). In Larry's final days, we did not turn off the BiPAP for any reason. However, we did gradually reduce the volume as his lungs could no longer tolerate what they had. Ronnie, however, may be in the opposite position. I would certainly adjust the volume to his needs, as well as target rate if the backup rate is tripping, and Ti min/max, triggering and cycling (the latter may not apply if you are using a Respironics machine).

Moreover, as you increase the morphine dose and adjust the BiPAP, Ronnie is less likely to feel mucus plugs. I would lay out both options (continuous BiPAP or breaks for suction/CA) in advance, before you are in the moment again.

This is the hardest road, Sissy. You asked about dosing and how much longer it will be. As others have noted, nutrition, other meds and history have a lot to do with that. You could also ask about how his SpO2 is trending, if you have not been using an oximeter. If there is family, friends he wants to see/hear by phone, things like that, I would not delay. This is the time for his favorite music, movies, anything he finds comforting. It may be time to shift your focus from how long he has to ensuring he passes well. There is still much you can do toward that, and you will remember how much you helped, always.

Ronnie is lucky to have you at his side.
Igelb, he does use a respironics AVAPS, but when we were here the last time, they contacted our ALS clinic (pulmoligst) and he told them he did not want to change the setting due to the fact that it would also change the exhaling part of it, and he didnt want the CO2 to start building up.....? Which confuses me becouse you would think both settings coud be adjusted. Keep in mind, the clinic we go to (well used to go to) had no idea what a cough assist was..... I learned these things from takling to you all, Needless to say our faith in the clinic is shot. they have done absolutly nothing to help us through any of this.... but anyway, sorry got side tracted.
Also for the last week he havent had his mask off hardly at all, just to get a drink, and a few suctions when we can.
Also they tell us that there is no since in taking O2 levels because with his mashine its always going to be 100%.......as well as "what are we going to do if it is low...nothing, so no since"... so i dont know what to think....
 
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