debwilson77
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We are in the process of buying an accessible motorhome, not cheap but the only way we can travel with all of Marks gear.
Venting tomorrow---which will surely cause more venting
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Becky - thanks for the update. So very happy to hear you are safely at home.
It’s so hard when medical professionals come to the home and are clueless, sometimes you feel like what is the point. I’m glad you could get the point across to the chief that dispatches EMS to you home. I cannot believe an ambulance crew would not know simple bagging and that an RT had to “think” about the issue. Just stunning.
Happy to hear you have that go bag too. Always had one for Brian, but not for me. Fortunately I was never very far from the hospital, and also fortunately my choice hospital was only 5-10 min depending on lights and traffic.
Not sure I even want to have anything to do with ALS again when this is done. If you’ve had time to check my thread, you’ll understand why.
Hugs,
Sue
It’s so hard when medical professionals come to the home and are clueless, sometimes you feel like what is the point. I’m glad you could get the point across to the chief that dispatches EMS to you home. I cannot believe an ambulance crew would not know simple bagging and that an RT had to “think” about the issue. Just stunning.
Happy to hear you have that go bag too. Always had one for Brian, but not for me. Fortunately I was never very far from the hospital, and also fortunately my choice hospital was only 5-10 min depending on lights and traffic.
Not sure I even want to have anything to do with ALS again when this is done. If you’ve had time to check my thread, you’ll understand why.
Hugs,
Sue
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Becky, I am so glad to hear you are both at home and doing well - GR8! I am glad to hear that it seems that Matt has kicked the persistent infection It's interesting to know that a request for a paramedic could possibly be made; not sure if that is possible in our area or not......? I may have to find out if we need to make sure Dave would only be taken to the medical center which is 6 miles further than our community hospital! At any rate, I am sorry to hear of the very stressful situation you both had to endure while traveling via EMS to the hospital; as Sue said - stunning that an ambulance crew did not know how to operate an Ambu bag?!? Thank God for the home health nurse you had with you at the time!
I agree whole-heartedly with you Becky; I don't want Dave to end his days staring at the same spot on the wall for a couple of months. I want him to "rage against the dying of the light" as long as that makes sense, but I also want to be able to alleviate any horrible situations of distress if I can. In May of 2016 I could have easily lost Dave, when he developed "core pulmonale" from a very large, pulmonary embolism lodged in the area where the right and left pulmonary arteries bifurcate. From what I read, most people die from this; Dave's heart was very strong from many years of vigourous hiking, etc. We were on the island of Kauai when this happened. The small hospital on island could not deal with Dave's situation (which at the time they thought was an MI, but they did not possess the equipment to perform a coranary catheterization). I was given 45 min. to haul A$$ back to the condo, throw everything I could imagine into a bag or two, and zoom back to the local ER to be ready to fly along with Dave on an inter-island flight back to Oahu. Remarkably, I forgot almost nothing for Dave, but I did a poor job of packing clothing for me! Great excuse for me to walk to downtown Waikiki for some unplanned shopping after the first tense 1.5 days!
Dave until just very recently has expressed no heroic measures. However, I don't want him to suffer with horrible air hunger/anxiety and I don't want him to die in a hospital! We have not yet had a true emergency that I couldn't handle (minor things - mostly transfers out of unplanned wheelchair predicaments or minor aspirations) If Dave is in distress and I don't want him to suffer severe air hunger, etc., I guess I should call 911 eventhough he has previously said no heroic measures? I guess that is what I would do, and go from there ...... This is H*LL - the unknown and planning for when/where/what may hit is never-ending. We don't have hospice on board yet, and truthfully the main reason for that is, A). Our neuro stated "you're not ready for that yet" and, B). We still are planning on traveling (which the neuro knows and maybe his reason for #1!?). IDK if we can have hospice on board and then (if Dave is still hanging in there) say ... "hey, we don't need you now, 'cause we're going to FL for 2 months ....... call you when we return!".
Beautiful photo Laurie; thanks. Yes, Venice would be an extremely challenging locale because there are many bridges with steps to go over the many canals. Maybe I'll rent some videos on Venice and find some specialty Italian cocktail recipes while we watch some of the video cams you provided links to - good idea! We have watched many nature/science shows for places I would never want to go to personally (Antarctica for example) due to my desire for creature comforts! Anyway, we have limited our travels to ones we can drive to and (last August) to Bermuda via cruise. We are thinking of another cruise, but are somewhat apprehensive at this time.
Becky, here's to hoping you and Matt have lots of enjoyable time left together and that you have the infections under control!
I agree whole-heartedly with you Becky; I don't want Dave to end his days staring at the same spot on the wall for a couple of months. I want him to "rage against the dying of the light" as long as that makes sense, but I also want to be able to alleviate any horrible situations of distress if I can. In May of 2016 I could have easily lost Dave, when he developed "core pulmonale" from a very large, pulmonary embolism lodged in the area where the right and left pulmonary arteries bifurcate. From what I read, most people die from this; Dave's heart was very strong from many years of vigourous hiking, etc. We were on the island of Kauai when this happened. The small hospital on island could not deal with Dave's situation (which at the time they thought was an MI, but they did not possess the equipment to perform a coranary catheterization). I was given 45 min. to haul A$$ back to the condo, throw everything I could imagine into a bag or two, and zoom back to the local ER to be ready to fly along with Dave on an inter-island flight back to Oahu. Remarkably, I forgot almost nothing for Dave, but I did a poor job of packing clothing for me! Great excuse for me to walk to downtown Waikiki for some unplanned shopping after the first tense 1.5 days!
Dave until just very recently has expressed no heroic measures. However, I don't want him to suffer with horrible air hunger/anxiety and I don't want him to die in a hospital! We have not yet had a true emergency that I couldn't handle (minor things - mostly transfers out of unplanned wheelchair predicaments or minor aspirations) If Dave is in distress and I don't want him to suffer severe air hunger, etc., I guess I should call 911 eventhough he has previously said no heroic measures? I guess that is what I would do, and go from there ...... This is H*LL - the unknown and planning for when/where/what may hit is never-ending. We don't have hospice on board yet, and truthfully the main reason for that is, A). Our neuro stated "you're not ready for that yet" and, B). We still are planning on traveling (which the neuro knows and maybe his reason for #1!?). IDK if we can have hospice on board and then (if Dave is still hanging in there) say ... "hey, we don't need you now, 'cause we're going to FL for 2 months ....... call you when we return!".
Beautiful photo Laurie; thanks. Yes, Venice would be an extremely challenging locale because there are many bridges with steps to go over the many canals. Maybe I'll rent some videos on Venice and find some specialty Italian cocktail recipes while we watch some of the video cams you provided links to - good idea! We have watched many nature/science shows for places I would never want to go to personally (Antarctica for example) due to my desire for creature comforts! Anyway, we have limited our travels to ones we can drive to and (last August) to Bermuda via cruise. We are thinking of another cruise, but are somewhat apprehensive at this time.
Becky, here's to hoping you and Matt have lots of enjoyable time left together and that you have the infections under control!
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Buckhorn,
There is no reason to believe that Dave would suddenly have air hunger while you lacked a plan, and less reason to call 911 if he's a DNR. Like you say, you don't want him to die in a hospital.
Air hunger typically doesn't show up out of nowhere, from 0 to 60. Whether you have hospice at hand or are on the DIY plan as we were, you have morphine (assuming DIYers asked a doc to write it before this day arrives), you can change BiPAP settings, you know where the power switch is, you can deal.
Note: If someone is gasping for air on an ongoing basis, they most often have the wrong BiPAP settings and could be years from death. Sometimes temporary changes are needed, too. For example, both target volume and backup rates should be turned off during prolonged coughing/choking in favor of static IPAP/EPAP.
There is no reason to believe that Dave would suddenly have air hunger while you lacked a plan, and less reason to call 911 if he's a DNR. Like you say, you don't want him to die in a hospital.
Air hunger typically doesn't show up out of nowhere, from 0 to 60. Whether you have hospice at hand or are on the DIY plan as we were, you have morphine (assuming DIYers asked a doc to write it before this day arrives), you can change BiPAP settings, you know where the power switch is, you can deal.
Note: If someone is gasping for air on an ongoing basis, they most often have the wrong BiPAP settings and could be years from death. Sometimes temporary changes are needed, too. For example, both target volume and backup rates should be turned off during prolonged coughing/choking in favor of static IPAP/EPAP.
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I would agree that if your PALS wants 'no heroic measures' then calling 911 could put you in a situation. I think this is why it's so important to be clear on what our PALS wants.
There are no rights or wrongs in making that choice. However it comes down to advocating for what our PALS want - if a PALS wants all measures, then we have a bag packed and always ready, if not then we have things ready at home to cope with looking after them through whatever.
There are no rights or wrongs in making that choice. However it comes down to advocating for what our PALS want - if a PALS wants all measures, then we have a bag packed and always ready, if not then we have things ready at home to cope with looking after them through whatever.
Buckhorn
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Laurie & Tillie - no Dave does not typically have air hunger; there have been some situations lately, but when investigated with a flashlight, they were related to nasal blockages. We do NOT have any orders for morphine at hand. How do I ask for that!? I thought maybe I had to have hospice involved for morphine orders?
I am totally, 100% confindent in my abilities to administer morphine as needed. Many (many) moons ago ...... almost 40 years now, I was in a BSN nursing program. I have given my share of IM and sub-Q shots (to people and to our many pets) so I am in my comfort zone there. Yes, (until recently) Dave has said no heroic measures. Very recently he admitted that he might want to try IV via tracheostomy to at least give it a try; completely flumocked me and now I am left hanging thinking if I did not at least try that for Dave I would feel forever guilty.
TY Laurie & Tillie ....... and someday soon I hope to start my own thread. Being a bit "wordy" IDK yet what I would call it!!
I am totally, 100% confindent in my abilities to administer morphine as needed. Many (many) moons ago ...... almost 40 years now, I was in a BSN nursing program. I have given my share of IM and sub-Q shots (to people and to our many pets) so I am in my comfort zone there. Yes, (until recently) Dave has said no heroic measures. Very recently he admitted that he might want to try IV via tracheostomy to at least give it a try; completely flumocked me and now I am left hanging thinking if I did not at least try that for Dave I would feel forever guilty.
TY Laurie & Tillie ....... and someday soon I hope to start my own thread. Being a bit "wordy" IDK yet what I would call it!!
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Buckhorn, any physician (in our case, an internist) can write morphine. Dave does not have to be in hospice. The indication would be that he has experienced air hunger on a temporary basis and you want to be prepared for anything less amenable to mechanical intervention. You might also want to have codeine on hand as it can begin with coughing.
Re the idea of a trach, I would take Dave through (not all at once), Diane H's site, Becky/Sue's descriptions and some of the others (you can search on vent, etc.) And there are YouTube videos. Tell him you want him to know what he is saying yes or no to, and there is no pressure either way. But the costs and implications for care should be part of the discussion, as it is a part of real life.
Re the idea of a trach, I would take Dave through (not all at once), Diane H's site, Becky/Sue's descriptions and some of the others (you can search on vent, etc.) And there are YouTube videos. Tell him you want him to know what he is saying yes or no to, and there is no pressure either way. But the costs and implications for care should be part of the discussion, as it is a part of real life.
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Buckhorn rarely to PALS receive their morphine by injection - usually it is orally or sub-lingually. Yep any doctor can write the script.
Becky sorry to digress and deviate from your thread - so glad you are home again!
Becky sorry to digress and deviate from your thread - so glad you are home again!
wishmobbing
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Becky, your thread seems to be the new CALS roll-call so I'll just roll with it and make use of the learned stream of visitors here. 
I wonder about morphine, too. Our wonderful family doctor (also very palliative knowledgable) prescribed Ativan (as needed) against panic and morphine drops (via the tube) against beginning air hunger. She wanted him to take a baby dose (as she put it) of four-times a day 2 drops, adding up to only 10 mg a day. After the first three doses he had an late evening episode of air hunger (without the mask), heightend pulse (110), dizzyness and hot/cold feeling. Put him under the mask and talked to him, he didn't want the Ativan yet, it got better after maybe 15 min. Same repeated the next night. I'm guessing side effects and we stopped the morphine for now and will talk to our doctor this afternoon.
Our nurse suggested very modestly that it's maybe too early for morphine and that the side effects will diminish automatically once the drug is "needed". Like it's running amok now because there is no persistent symptom it can tackle. (She told me from her experience that pain patients don't get addicted to morphine, prabably because the drug pushes them up to a normal level, whereas it would push a healthy person without pain over the normal level to a heightend state.) She also said that the Ativan will probably be sufficient for small attacks of air hunger he had so far.
Two days ago we did shower with the mask for the first time and he took his first half Ativan to prepare for it. He didn't notice any serious effects and it worked pretty well. I'm confident now that a whole one won't mush him in a crisis.
Oh, I digressed! What I wanted to know is: If I give him some morphine drops in a crisis, will they act faster when given sublingual (swallowing is not his favourite pastime) than via tube? Or would that be different drops altogether? Our doctor also mentioned morphine as a s.c. shot or skin-pop (as Keith Richards would prefer it). That would attack much quicker than orally/tube especially if digestion is slow but it's something for later on.
Just a little inspiration...
"Get your scroll wheels smokin' with Buckhorn"
"The home of prolific trolling"
"Wonder woman's one-woman show wonders about various whatnots"
So start your own thread already! I'll keep up hijacking Sue's, Lenore's and Becky's threads. Or we could start a joint venture thread:
"Crazy persons about to talk business and digressing heavily"
I wonder about morphine, too. Our wonderful family doctor (also very palliative knowledgable) prescribed Ativan (as needed) against panic and morphine drops (via the tube) against beginning air hunger. She wanted him to take a baby dose (as she put it) of four-times a day 2 drops, adding up to only 10 mg a day. After the first three doses he had an late evening episode of air hunger (without the mask), heightend pulse (110), dizzyness and hot/cold feeling. Put him under the mask and talked to him, he didn't want the Ativan yet, it got better after maybe 15 min. Same repeated the next night. I'm guessing side effects and we stopped the morphine for now and will talk to our doctor this afternoon.
Our nurse suggested very modestly that it's maybe too early for morphine and that the side effects will diminish automatically once the drug is "needed". Like it's running amok now because there is no persistent symptom it can tackle. (She told me from her experience that pain patients don't get addicted to morphine, prabably because the drug pushes them up to a normal level, whereas it would push a healthy person without pain over the normal level to a heightend state.) She also said that the Ativan will probably be sufficient for small attacks of air hunger he had so far.
Two days ago we did shower with the mask for the first time and he took his first half Ativan to prepare for it. He didn't notice any serious effects and it worked pretty well. I'm confident now that a whole one won't mush him in a crisis.
Oh, I digressed! What I wanted to know is: If I give him some morphine drops in a crisis, will they act faster when given sublingual (swallowing is not his favourite pastime) than via tube? Or would that be different drops altogether? Our doctor also mentioned morphine as a s.c. shot or skin-pop (as Keith Richards would prefer it). That would attack much quicker than orally/tube especially if digestion is slow but it's something for later on.
Just a little inspiration...
"Get your scroll wheels smokin' with Buckhorn"
"The home of prolific trolling"
"Wonder woman's one-woman show wonders about various whatnots"
So start your own thread already! I'll keep up hijacking Sue's, Lenore's and Becky's threads. Or we could start a joint venture thread:
"Crazy persons about to talk business and digressing heavily"
Last edited:
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We used to have a brilliant thread called the pity party .....
Different to the roll call - that's just meant to allow CALS who haven't said anything to put their hand up and say a couple of words so we know they have checked in.
Buckhorn why don't you just start one called - So many words ....
Different to the roll call - that's just meant to allow CALS who haven't said anything to put their hand up and say a couple of words so we know they have checked in.
Buckhorn why don't you just start one called - So many words ....
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Wish, I'm with the nurse. No point (and some harm) to starting morphine before he needs it. Morphine causes the symptoms you described, as well as possibly constipation, confusion, etc.
Some people say, "Start it early and s/he will need less later." One, we don't have any evidence that's true in this population generally, given ALS is in part a disease of metabolism. And if the argument is that air hunger begins early and we are warding it off, skip to point 4.
Two, if air hunger is breaking through any level of morphine, the level of sedation relative to higher dosing is very individual, but the point will be enough morphine to be comfortable, not a pre-established dose. Three, no one gets extra credit for dying while getting lower morphine doses. Four, air hunger is a sign, until the very end of life, that BiPAP settings should be at least re-examined and improved titration attempted. Why would we want to mask that information?
Ativan and/or codeine [for anxiety and coughing, respectively] take many PALS a long, long way, and many do not use either, or late in the journey.
Some people say, "Start it early and s/he will need less later." One, we don't have any evidence that's true in this population generally, given ALS is in part a disease of metabolism. And if the argument is that air hunger begins early and we are warding it off, skip to point 4.
Two, if air hunger is breaking through any level of morphine, the level of sedation relative to higher dosing is very individual, but the point will be enough morphine to be comfortable, not a pre-established dose. Three, no one gets extra credit for dying while getting lower morphine doses. Four, air hunger is a sign, until the very end of life, that BiPAP settings should be at least re-examined and improved titration attempted. Why would we want to mask that information?
Ativan and/or codeine [for anxiety and coughing, respectively] take many PALS a long, long way, and many do not use either, or late in the journey.
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wishmobbing
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Laurie, I'm happy to say that everyone's with the nurse (who's a gem anyway). Family doctor visited today and concurs. Morphine as a safety net, Ativan add needed for now and a sharp look at the Bipap settings.
My PALS has an appointment at the ALS clinic next week but we won't go, it's too much for him. No need for equipment. The only downside is that the RT can't see him and make adjustments with his live feedback. Maybe I'll try to consult with him on the phone with me as the button pusher.
This forum will be clinic from now on.
Becky, I'm sure you're busy and I hope it's smooth sailing. We'll keep your thread warm and cozy for you.
My PALS has an appointment at the ALS clinic next week but we won't go, it's too much for him. No need for equipment. The only downside is that the RT can't see him and make adjustments with his live feedback. Maybe I'll try to consult with him on the phone with me as the button pusher.
This forum will be clinic from now on.
Becky, I'm sure you're busy and I hope it's smooth sailing. We'll keep your thread warm and cozy for you.
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My hubby was probably in a vent around the same time as yours.... I have grown to hate the alarm but luckily it rarely goes off these days and the trilogy which once did the bipap is now on vent settings. It has actually been a little easier to take care of him now as I rarely have to get up at 2 or 3 am and he’s on a hospital bed in the spare bedroom. He can still talk with the trach.
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Hi Sasha58; welcome to our "show" (it's kinda a Shi$sho@, but whatever .......). You will get lots of anwsers here - just ask away. I'm glad to hear that your husband can still talk with the trach. I was told that if a person (PALS or otherwise) could talk, chew, swallow before a trach that thre is no reason to believe that he/she will not be able to afterwards. This too is subject to change, as the ALS symptoms march on and no one really can predict which muscles will be affected next.
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What great discussion. So glad you could all keep the thread warm!!!!
I do miss the Pity Party thread. I learned SOOO much from it!
So, we're back in the hospital. Again. Seriously. My sister is due in Friday as is oldest son and his family. Other son and his family due in Sunday. Let's see if we can get out of here in time for the weekend!!!
The IV antibiotics ended Friday. Saturday his sugars started climbing, low grade fever returned, secretions picked up and he started acting a bit off. Today, undeniable confusion and sugar at 491. Fortunately the Pic line is still in---it has made things easier in the ER. I tried two days to reach his pulmonologist with no luck, so today called the Infectious Disease department. I think I knew the answer, but I just had to hear it before packing him up yet again.
As I type we are waiting on the transport team to take us upstairs to the MICU. Two weeks ago yesterday...I think...we left here. I'm going to have to send these people cookies at Christmas.
Becky
I do miss the Pity Party thread. I learned SOOO much from it!
So, we're back in the hospital. Again. Seriously. My sister is due in Friday as is oldest son and his family. Other son and his family due in Sunday. Let's see if we can get out of here in time for the weekend!!!
The IV antibiotics ended Friday. Saturday his sugars started climbing, low grade fever returned, secretions picked up and he started acting a bit off. Today, undeniable confusion and sugar at 491. Fortunately the Pic line is still in---it has made things easier in the ER. I tried two days to reach his pulmonologist with no luck, so today called the Infectious Disease department. I think I knew the answer, but I just had to hear it before packing him up yet again.
As I type we are waiting on the transport team to take us upstairs to the MICU. Two weeks ago yesterday...I think...we left here. I'm going to have to send these people cookies at Christmas.
Becky
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