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Post by rmc on Oct 5, 2018 23:07:16 GMT
My father needs a BiPAP and he is trying to recover from pneumonia with the added complication of being ever so slightly in heart failure (his aorta is dilated some). Anyway, build up of fluids in his lungs makes it difficult to breathe as it is. The BiPAP helps him breathe because he is suffering from Sleep Apnea and now that he has been oxygen deprived several times, he also has Central Apnea too now.
The issue with all of this is the fact that he doesn't yet officially have a his "own" BiPAP. He is in line to get one, but there are a bunch of weird hurdles he must pass in order to get one outside the ICU. And, to make matters worse, the only place that the hospital has one is in the ICU itself, naturally.
So he recovers slightly and they think he is good enough to move to a recovery room outside the ICU. But, wham! Not having the BiPAP causes him to have a lot of difficulty breathing and his "numbers" get way out of whack, and then he is returned back to the ICU, but in worse shape than previously.
Getting him his own BiPAP involves him going through a Veteran's Affairs Sleep Study. Trouble is, you have to wait for one of those, and he isn't really in all that great of shape to handle such a test anyway as those are done on sight at the VA (I've been there. They wouldn't be set up to handle him in his shape).
Anyway, does anyone have any idea how to prevent them from moving him out of the ICU? It seems to be killing him when they move him out of there!
(Earlier when he was first in the ER, Sunday September 30, 2018)
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Post by the light works on Oct 6, 2018 0:10:13 GMT
well, that is kind of a bad situation.
all I can think of is to just make a huge fuss on all fronts.
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Post by rmc on Oct 6, 2018 1:19:21 GMT
Thank you, The Light Works.
Oh! And, one other detail: believe me, we'd buy him his own BiPAP. Trouble is, without a prescription for it (that's right. He doesn't apparently have that yet from he VA), we'd not be allowed to leave it with him!
We are trying our best to quicken the pace for his prescription, but it requires a sleep study done by the VA. Meanwhile, he is in a non-VA hospital (he was sent to this hospital BY the VA retirement home!) And sent to the ER there, initially.
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Post by the light works on Oct 6, 2018 1:31:42 GMT
I think there should be a way for the hospital to override the sleep study demand. (both Mrs TLW and her mother are on BiPAP machines and I have the occasional customer on the fire/rescue side whose primary benefit from taking an ambulance ride to the hospital is they put them on a CPAP - but they don't have access to one at home.
(tech note for those who don't know - CPAP provides constant positive airway pressure to help a person breathe at night. BiPAP provides higher pressure for inhalaion and then reduces pressure to allow exhalation.)
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Post by rmc on Oct 6, 2018 1:42:55 GMT
That sounds like what the nurse said, and my brother is actually the Power of Attorney and is working that angle (trying to override the study requirement). Meanwhile, the problem (ironically) is that my father keeps 'looking better' and then they decided to release him to the third floor (where he deteriorates over night without the biPAP). This time he is really paying for being one tough cookie.
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Post by the light works on Oct 6, 2018 1:51:20 GMT
That sounds like what the nurse said, and my brother is actually the Power of Attorney and is working that angle (trying to override the study requirement). Meanwhile, the problem (ironically) is that my father keeps 'looking better' and then they decided to release him to the third floor (where he deteriorates over night without the biPAP). This time he is really paying for being one tough cookie. it is a problem with our modern medical doctrine. there is no consideration for the fact that sometimes improvement is only due to ongoing care. |
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Post by rmc on Oct 6, 2018 2:11:49 GMT
That sounds like what the nurse said, and my brother is actually the Power of Attorney and is working that angle (trying to override the study requirement). Meanwhile, the problem (ironically) is that my father keeps 'looking better' and then they decided to release him to the third floor (where he deteriorates over night without the biPAP). This time he is really paying for being one tough cookie. it is a problem with our modern medical doctrine. there is no consideration for the fact that sometimes improvement is only due to ongoing care. Why is there that unfounded thought crawling around in the back of my mind that they only say he looks better in order to take him away from the BiPAP in order to help him die!? Is there really any place for such thinking!? Am I mad? |
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Post by the light works on Oct 6, 2018 2:29:35 GMT
it is a problem with our modern medical doctrine. there is no consideration for the fact that sometimes improvement is only due to ongoing care. Why is there that unfounded thought crawling around in the back of my mind that they only say he looks better in order to take him away from the BiPAP in order to help him die!? Is there really any place for such thinking!? Am I mad? usually, if a healthcare person "helps someone die" it usually involves high doses of painkillers. it also typically involves someone who is close to death and suffering. |
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Post by mrfatso on Oct 6, 2018 6:03:29 GMT
As a CPAP user myself you have my self you have my deepest sympathies, getting through all the hoops needed to get a prescription for a device is a problem here with the NHS and with the system you have in the US it seems even worse.
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Post by rmc on Oct 6, 2018 12:23:50 GMT
As a CPAP user myself you have my self you have my deepest sympathies, getting through all the hoops needed to get a prescription for a device is a problem here with the NHS and with the system you have in the US it seems even worse. Thank you! Now trouble brews between brothers too! My father was admitted to the ICU for a time, in fact my mother and I thought he never left the ICU. But, what really happened was, while my mother and I were away, he was released upstairs for a day and night because he seemed 'good'. But he was, as I said earlier, readmitted to the ICU for all the problems he had without the BiPAP. Meanwhile, my brother the POA, was being notified that he was moved. But, he was having a tooth pulled and could not come down to overlook things. So he called us, only telling us that he was being 'moved'. When we were more-or-less ready to depart to the hospital, we called the hospital to get his new room number. But the nurse instead told us he was currently still in the ICU with no plans to be moved. In fact, he was in the same ICU room number we saw him in originally. From our perspective he never left the ICU at all and, from our assumption, his condition hadn't changed either. Anyway, we were in the middle of a major dispute involving condo renters who were trying to load all the dumpsters with garbage as they were moving out. Threats to life and limb had been made during this dispute and the police were involved. Choosing to leave for the hospital just an hour or so later than what my brother apparently needed, ended up causing him to now believe that we don't understand or care about my father. I don't need his anger toward me on top of everything else. |
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Post by the light works on Oct 6, 2018 12:53:53 GMT
As a CPAP user myself you have my self you have my deepest sympathies, getting through all the hoops needed to get a prescription for a device is a problem here with the NHS and with the system you have in the US it seems even worse. Thank you! Now trouble brews between brothers too! My father was admitted to the ICU for a time, in fact my mother and I thought he never left the ICU. But, what really happened was, while my mother and I were away, he was released upstairs for a day and night because he seemed 'good'. But he was, as I said earlier, readmitted to the ICU for all the problems he had without the BiPAP. Meanwhile, my brother the POA, was being notified that he was moved. But, he was having a tooth pulled and could not come down to overlook things. So he called us, only telling us that he was being 'moved'. When we were more-or-less ready to depart to the hospital, we called the hospital to get his new room number. But the nurse instead told us he was currently still in the ICU with no plans to be moved. In fact, he was in the same ICU room number we saw him in originally. From our perspective he never left the ICU at all and, from our assumption, his condition hadn't changed either. Anyway, we were in the middle of a major dispute involving condo renters who were trying to load all the dumpsters with garbage as they were moving out. Threats to life and limb had been made during this dispute and the police were involved. Choosing to leave for the hospital just an hour or so later than what my brother apparently needed, ended up causing him to now believe that we don't understand or care about my father. I don't need his anger toward me on top of everything else. nothing like having three crises going on at once to muddy the waters. |
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Post by mrfatso on Oct 6, 2018 16:00:39 GMT
Thank you! Now trouble brews between brothers too! My father was admitted to the ICU for a time, in fact my mother and I thought he never left the ICU. But, what really happened was, while my mother and I were away, he was released upstairs for a day and night because he seemed 'good'. But he was, as I said earlier, readmitted to the ICU for all the problems he had without the BiPAP. Meanwhile, my brother the POA, was being notified that he was moved. But, he was having a tooth pulled and could not come down to overlook things. So he called us, only telling us that he was being 'moved'. When we were more-or-less ready to depart to the hospital, we called the hospital to get his new room number. But the nurse instead told us he was currently still in the ICU with no plans to be moved. In fact, he was in the same ICU room number we saw him in originally. From our perspective he never left the ICU at all and, from our assumption, his condition hadn't changed either. Anyway, we were in the middle of a major dispute involving condo renters who were trying to load all the dumpsters with garbage as they were moving out. Threats to life and limb had been made during this dispute and the police were involved. Choosing to leave for the hospital just an hour or so later than what my brother apparently needed, ended up causing him to now believe that we don't understand or care about my father. I don't need his anger toward me on top of everything else. nothing like having three crises going on at once to muddy the waters. You know w what they say about it never raining it pours. I hope things get better between you and your brother rmc it's high stress times like these that can upset everyone. |
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Post by rmc on Oct 6, 2018 16:29:37 GMT
The docs position is this: he has pnuemonia. And, he has sepsis due to a continued state of pnuemonia. The reason pnuemonia continues to show up is because he breathes in a bit of food or water due to poor throat muscle control every time he eats or drinks. So, pnuemonia will always end up getting in the way of his other problems, making them worse essentially.
My brother seems to think his swallowing difficulties are only as a result of his having been intubated once a while back, and that perhaps he will one day swallow normally once again.
Anyway, for now he is weak, but improving slightly since they are addressing the sepsis with antibiotics. The doc's continued position is that this could be slightly winning a battle for a time only to lose the war, since he will ultimately aspirate again at some point. Then it gets all intubation or trach and feedng tubs, awful stuff.
I think my brother and I will need to carefully consider all this using cool heads. We'll see.
Thank you, everyone for your help!
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Post by the light works on Oct 6, 2018 23:44:10 GMT
The docs position is this: he has pnuemonia. And, he has sepsis due to a continued state of pnuemonia. The reason pnuemonia continues to show up is because he breathes in a bit of food or water due to poor throat muscle control every time he eats or drinks. So, pnuemonia will always end up getting in the way of his other problems, making them worse essentially. My brother seems to think his swallowing difficulties are only as a result of his having been intubated once a while back, and that perhaps he will one day swallow normally once again. Anyway, for now he is weak, but improving slightly since they are addressing the sepsis with antibiotics. The doc's continued position is that this could be slightly winning a battle for a time only to lose the war, since he will ultimately aspirate again at some point. Then it gets all intubation or trach and feedng tubs, awful stuff. I think my brother and I will need to carefully consider all this using cool heads. We'll see. Thank you, everyone for your help! good luck. |
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Post by mrfatso on Oct 7, 2018 6:12:30 GMT
Good luck from me as well.
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Post by rmc on Oct 8, 2018 13:12:43 GMT
Someone PM'd me wanting clarification for what I really meant with the following statement I made a while back:
Their position was that they weren't sure what I meant and wondered if perhaps I was really projecting my wants and desires about wanting to take my father off the BiPAP to let him die.
Well, that's not it. Both my brother and I know he will eventually die at some point. But, we are certain that time is NOT now. He just needs to recover from pneumonia and continue using the thickening agent for his drinking water and continue to use the BiPAP at night. We don't want to watch him essentially drown in his own fluids, and while speaking with my father about his condition recently, he did, himself, mention that he did not want to die.
Meanwhile, the hospital staff has mentioned a couple of times now that there is something to the idea of letting my dad have more quality time rather than focusing on quantity of time. To the hospital, our wanting him to recover essentially means we want his death to be drawn out. That's not it. They have offered to let my father basically do what ever he wants right now. So if he doesn't want the BiPAP, let him not use the BiPAP. If he doesn't want the water thickening agent, let him drink normal 'thin' water. NOPE! Not going to do that. But, I did come in recently and saw that my father was trying to sleep, but was having great difficulty because the BiPAP was on its storage rack next to him, and the nurse on duty was outside his room looking at the internet! (I saw over her shoulder that she was looking at homes to buy on some real estate web site!)
So, sorry if that statement above was poorly written or whatever. No. I don't want to watch my father die by pneumonia. The time will come where he could peacefully die in his sleep. That would be better, but is stall something I'd prefer not happen, of course.
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Post by the light works on Oct 8, 2018 14:09:02 GMT
Someone PM'd me wanting clarification for what I really meant with the following statement I made a while back: Their position was that they weren't sure what I meant and wondered if perhaps I was really projecting my wants and desires about wanting to take my father off the BiPAP to let him die. Well, that's not it. Both my brother and I know he will eventually die at some point. But, we are certain that time is NOT now. He just needs to recover from pneumonia and continue using the thickening agent for his drinking water and continue to use the BiPAP at night. We don't want to watch him essentially drown in his own fluids, and while speaking with my father about his condition recently, he did, himself, mention that he did not want to die. Meanwhile, the hospital staff has mentioned a couple of times now that there is something to the idea of letting my dad have more quality time rather than focusing on quantity of time. To the hospital, our wanting him to recover essentially means we want his death to be drawn out. That's not it. They have offered to let my father basically do what ever he wants right now. So if he doesn't want the BiPAP, let him not use the BiPAP. If he doesn't want the water thickening agent, let him drink normal 'thin' water. NOPE! Not going to do that. But, I did come in recently and saw that my father was trying to sleep, but was having great difficulty because the BiPAP was on its storage rack next to him, and the nurse on duty was outside his room looking at the internet! (I saw over her shoulder that she was looking at homes to buy on some real estate web site!) So, sorry if that statement above was poorly written or whatever. No. I don't want to watch my father die by pneumonia. The time will come where he could peacefully die in his sleep. That would be better, but is stall something I'd prefer not happen, of course. funny. it read to me as though you were questioning whether it was normal for a person in your position to have an unfounded fear that the hospital staff were conspiring to hasten your father's death. |
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Post by mrfatso on Oct 8, 2018 22:04:49 GMT
I took it the same way TLW suggests as well, sometimes it seems that way.
But it's a difficult time for anyone, 20 years ago my Grandmother went into hospital whilst my mother was in Australia visiting my brother, as her eldest grandson I had to make some choices that I now regret extending life over quality of life stuff I won't go into details of. I still question was it worth the time brought for Mum to fly home to see Gran before she died or not.
Until you are faced with making such choices and then living with what we choose it's difficult to judge.
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Post by OziRiS on Oct 9, 2018 1:04:39 GMT
Seeing as rmc has taken this to the general board himself in order to clarify his position, there's no need to hide the fact that I was the one who PM'ed him about the matter. As I made clear to him from the beginning, I didn't PM him for the sake of my own privacy, but for his, just in case it turned out my suspicions were right and he didn't want that made public.
Now that rmc and I have been back and forth privately, that it's clear those suspicions were (luckily) unfounded and we've moved this out into the public, I see that others didn't read it the same way I did, so allow me to clarify why I contacted him directly.
Illness and death are hard topics to handle and, in some cases, having a terminally ill family member can be such a strain that you sometimes wish it would just be over. However, some people feel terribly guilty for thinking that way and are afraid of being judged if they talk about it. In those cases, projecting those feelings onto others can serve as a safe way to test the waters to find out how other people feel about the topic. If it turns out it isn't as taboo as you thought it was, you might feel a little less guilty about your thoughts and feelings and maybe even take the chance to talk about them openly. On the other hand, you might not even want to admit to yourself that you have those thoughts and feelings, even if others let you know it's perfectly okay.
Having seen that situation play out more than once before in my life, I had a suspicion that rmc might be struggling with some of those things. That maybe he secretly wished it could all be over soon, but didn't want to come right out and say it for whatever reason, so he was putting it out there as something "someone else" was thinking. Having those thoughts and feelings about someone you love and feeling like you have no one to talk to about it can be a really tough situation to be in, so, seeing some faint signs that he might be going through some of that, I offered a judgement-free place to talk about it if he needed to. And that's why I PM'ed him. If he really was projecting, there was bound to be a good reason for it and I saw no reason to out him in front of everyone if that was the case. That wouldn't have done anyone any good, especially not rmc.
Fortunately, I was wrong. Well... "Fortunately" in the sense that he at least isn't stuck in the moral turmoil I thought he was, but I guess unfortunately because that means he has some very real concerns about his father's care, which is hardly any better...
Anyway, as I've said numerous times before, I consider everyone here friends and that's basically what this was about. I saw one of my friends struggling with something, got concerned and offered an outlet. Turned out I was wrong about what aspect of it he was struggling with, but the offer stands nonetheless in case there are things he needs to get off his chest that he doesn't want on the open board.
Some of you already know this, but for those of you who might not, I just want to take this chance to make it clear that that offer extends to all of you. If you ever need to talk in confidence with someone outside your normal social circle for whatever reason, my PM inbox is always open.
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Post by rmc on Oct 9, 2018 1:33:38 GMT
I think it became clear to me, my position in all this (because I actually wondered for a while, so you were at least partially correct) was when I was further explaining to my dad why he couldn't have the normal water out of the sink that he was asking me for.
I told him the nasty thickening agent prevents moisture from ending up in his lungs where it could cause pneumonia. And, I then reminded him that he could die from said pneumonia. And I asked him, "you don't want to die do you?"
His eyes got childlike round, with a fairly worried look on his face and said, "well, no!"
I could see then that this specific time hadn't given him enough hell to have caused him to give up. So I decided neither would I.
The hospital, on the other hand, seems to see it differently. I have warned my brother to watch their carelessness closely. (He is many miles closer and is able to keep tabs daily. Plus he is the Power of Attorney, so if the hospital is up to let's say being a little forgetful, he'll hopefully set them straight)
Thanks for all the input! Great stuff! Really makes you think. (I can always use the mental exercise!!)
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