Hi, it’s Patrik Hutzel from INTENSIVECAREHOTLINE.COM where we instantly improve the lives for Families of critically ill Patients in Intensive Care, so that you can make informed decisions, have PEACE OF MIND, real power, real control and so that you can influence decision making fast, even if you’re not a doctor or a nurse in Intensive Care!
This is another episode of “YOUR QUESTIONS ANSWERED“ and in last week’s episode I answered another question from our readers and the question was
Until When Should My Sister Stay On a Ventilator In the ICU?
You can check out last week’s question by clicking on the link here.
In this episode of “YOUR QUESTIONS ANSWERED” I want to share this experience from one of my clients, Joyce, as part of my 1:1 consulting and advocacy service! Joyce’s sister is still in the ICU with a tracheostomy on a ventilator and Joyce is asking, how can she bring her sister home?
How Can I Bring My Sister Home Who is on a Ventilator in ICU?
“You can also check out previous 1:1 consulting and advocacy sessions with me and Joyce here.”
Patrik: Yeah. Yeah, yeah. Look, I do believe you’ve got a … Okay, let’s just say, for argument’s sake, stroke has been ruled out, okay. Let’s just say stroke has been ruled out. If in another week, she still hasn’t woken up, I would say two weeks not waking up, no stroke, no other neurological event. That’s a pretty significant sign that the critical illness has really hit her hard.
Joyce: Okay. So you would say, from what I’m hearing is about one more week from today, to see where it goes. Now, if for some reason we wake up and it’s great, we … Right. But another 14 days, and this is not getting better.
Patrik: Well, I’ll tell you another thing. Waking up, as you can already see, it’s not an event, it’s a process.
Joyce: No, I see that.
Patrik: Right. So even in three days, she may still not have woken up, and maybe in five days she’s doing a little bit. So what do you do then?
Joyce: Right. And not even that, okay. So that’s one issue. But the second issue is, if she’s never going to get off a vent, then.
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Patrik: Take her home. Take her home.
Joyce: If she never get off the vent, and I want to take her home, and I want to do this, and I’m ready to, she … I know my sister. We were everything to her. She wants to do it with us. She’s fighting because she wants us there. She is not going to do it in a cold box of a hospital setting. If she is holding on this long, give us the peace, give us the touch to do that. And I think this is the … You know what I’m saying? I’m not a difficult person, and I know what’s going on. I’m not trying to create rainbows and unicorns. I want to give my sister what she would want. She obviously does not want to be on the ventilator. And if that’s what it’s going to look like, then the next fight is, I need your help to figure out how I can set this up, and what are the red tape to get her out of the hospital?
Patrik: Yeah. Yeah. As you can already see, they probably do want her out. You can already see that. I do believe, if out of any times, now is the time to do it.
Joyce: Will they take her out do I have the right to say, “I want the transfer home?”
Patrik: Yeah, that’s a good question. It depends on the-
Joyce: If he said to me, “No.” The guy said to me, “No, you’ll never find a ventilator that will transport home.”
Patrik: Oh, that’s just crap. We transport people home all the time here. We do that through Intensive Care At Home. But I’ll tell you where it might be. I was working with a client before and they were in a similar situation. And in their place, because of state laws, they couldn’t get the client home. So that was state laws.
Joyce: But maybe in your place, you also have the same state law.
Patrik: I wouldn’t know.
Joyce: What is the state law, what did the law say?
Patrik: The law said that you could only go home on a ventilator if you have skilled nursing care. And they couldn’t find the skilled nursing care.
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Joyce: So let me just sum up this conversation. You and I, we’re going to talk throughout this. But you saying wait one more week. And that’s a very telling sign. After a week, you and I will talk. We’ll talk even before then. But after a week, the conversation needs to be had saying, “What is the next step?” Right. Because we’re not waiting months for this, right.
Patrik: No, no, no, no, no, you’re not waiting months for this.
Joyce: So if another week-
Patrik: Bear in mind though, within that week, ideally you have some clarification whether she had a stroke or not. The other thing they could do with a stroke, they could do an EEG. Have you heard of an EEG?
Joyce: I have heard that.
Patrik: Have you suggested that to them?
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Joyce: Is it the same thing where they have to get in a machine? What is-
Patrik: No, they have to get in a machine. They hook up electrodes to the skull. And they hook her up to a monitor. That will give them some indication. It’s not as good as a CT scan. The other thing, do you know, has she been referred to a neurologist?
Joyce: No.
Patrik: Okay. Needs to be referred to a neurologist. Sorry, I should have-
Joyce: I’ll call back the charge nurse, and I’m going to give her all these notes that I want. And I’ll get a hold of the doctor, and tell him that too, because within this week, at least if they find something, then I think the decision will be that much easier to fight to get her home. I don’t know if that’s going to be …
Joyce: And if the fight is not that, then the fight is to get inside the … The second fight would be, is getting inside the room. That would be … Because if she’s not COVID positive, they have to let us do anything. But I would fight to get into the room. And I don’t know if they’re letting anybody in the hospital right now because the surge is beyond.
Patrik: Right.
Joyce: I’m just … I just cannot believe they took her out of the ICU. I’m flabbergasted. You just saw my argument with her.
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Patrik: Yeah, yeah, yeah, yeah.
Joyce: I never thought that … I thought I really had a strong leg to stay there. And I’d never fathomed that they would do it to her.
Patrik: It’s unbelievable that you said they went from 10 beds to 28 beds. I mean, that’s unheard of. That’s unheard of.
Joyce: And they were setup for 10. So I’ve got to imagine how they have … I don’t even know how they have that setup. So look, I get it. Look, they’re pushed to the grounds. I don’t mean to be mean to the nurses by any means.
Patrik: No, no, but you got to push for your rights. You got to push for your rights. But you need answers. If in a week, she hasn’t woken up, okay. If in a week she hasn’t woken up, and you still don’t know whether she had a stroke or not, you’re none the wiser, really.
Joyce: That’s right, because it could still take time. But my question is … So here’s the telling time. Forget about the neurology at the moment. I guess the most telling thing situation is, is if this is not getting better. If the chest is not getting better. That’s also telling. Because forget it, the neurology will be what will be. The point is this, even if she wakes up, Patrik, and she still can’t get off, it doesn’t make my decision easier, because I can’t have her live with it.
Joyce: So honestly, this is important, but it really isn’t, because the goal is to get her off. And if she can never get off, then what’s the point? What’s the point? There’s no point. She’s never going to want to do that. I would never do that to her. She would never want that. So my question is, more than just the neurology side, the next focus is, is the chest getting better? And if the chests not getting better, within another week … I mean, the question is, at what point in time in COVID … I don’t know if you-
Patrik: Okay, I’ll tell you something there, Joyce, you could argue … Let’s just say she does wake up in the next week, okay. That will increase chances of her getting off the ventilator.
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Joyce: Right.
Patrik: Right. So that’s why …
Joyce: Right, so it goes together.
Patrik: Goes together. Because she will be more compliant, you could, for example, ask her to cough, you could ask her to do breathing exercises. You can’t do that at the moment, right. She would be more compliant with physio exercises, sitting … It would change the game. And then she could have a real chance of trying.
Joyce: Right. So but you think after 14 days of somebody not waking up, it’s a slim chance?
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Patrik: Slim chance.
Joyce: You’ve done it for how many years? You’ve done this a long time.
Patrik: Oh, 20 years.
Joyce: Okay. So within the 20 years, the 14 days-
Patrik: How many have I seen? Yeah, I have seen some, for sure. I have seen some. Look, I have seen patients where you think they’re never going to get off, I have seen that, and they’re never going to wake up, and you’ve had families that were pushing and pushing, and then the miracle happens. And then you see other things where you think, “Oh, yeah, this patient is on their way out. They’ll be out in a couple of days.” And all of a sudden, they die. So I’ve seen-
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Joyce: What can happen … If my sister takes a turn for the worse, what can … I guess anything can technically happen. But what can-
Patrik: Oh, the risk? The risk is just when someone is ventilated, the risk of the tube blocking, pneumothorax is always there.
Joyce: A heart attack or something?
Patrik: Well, I don’t know the full medical history. I don’t know the full medical history.
Joyce: The heart. The diaphragm is clean as a whistle.
Patrik: Okay. So if the heart is strong, she could go on forever. If the heart is strong, she could go on forever.
Joyce: And none of the organs failed, nothing failed, everything is working perfect.
Patrik: Yeah.
Joyce: Do you understand what I’m saying? It doesn’t make sense.
Patrik: Yeah. Oh, totally. Totally. I mean, absolutely. But this is not … And this is again, I think you and your family are clear in what you want. If you were to stop … If you were to go back to the doctors and say, “Hey, we want to stop the ventilation, then …”
Joyce: My mom is against it though. She said she doesn’t want to decide. She doesn’t ever want to pull the plug. She wants to let things happen. But then again, she’s full code, so she’s not really letting things happen. So it’s a contrary. I’m a little bit on the fence of this. I’m willing to wait it out. But I’m also … I don’t want to let her suffer. And I don’t know where that line is, and if she’s suffering right now.
Patrik: If she’s not awake, I would argue she’s not suffering. I would argue, just from the snapshot earlier, I would argue she looked peaceful. I have seen patients suffering. And don’t get me wrong, I didn’t see the full picture of your sister, but she didn’t look to me like she was suffering. I have seen patients suffering tremendously.
Joyce: So in the step down unit though … I know I’m raising hell because I want her there. But in all retrospect, if she can keep these numbers, it’s not the end of the world that she’s in a step down unit at the moment, correct?
Patrik: Look, if you had the choice between step down and LTAC, I would say step down.
Joyce: Obviously. Obviously. Right. I mean, I don’t know if I’ll even get to … If she’s going that way … And I don’t even know how long … And my question is this. Hold on, last question, because I know you have to go. Last question is, now, can they give me a *** that they’re going to turn … How long will they keep me at step down until they bring up LTAC?
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Patrik: Well, I tell you what that question needs to be. That question needs to be, “Is she COVID positive?” Because-
Joyce: She probably won’t be. Probably won’t be.
Patrik: Probably won’t be?
Joyce: After 35 days, she probably won’t be.
Patrik: Got to ask, because they won’t take her in LTAC if she’s COVID positive probably.
Joyce: Okay.
Patrik: So you need to ask whether she’s COVID positive or not. But the very important question-
Joyce: Is there’s anything else that would stop them from transferring?
Patrik: No, not really. No. The COVID probably. And bed availability. Bed availability in the other place.
Joyce: Listen, if she’s stable enough to go to step down, then she can technically be stable enough to go to LTAC.
Patrik: No, no, no. She’s too unsteady to go to LTAC. If she needs 100% of oxygen, she’s too unstable. Too unstable.
Joyce: Right. Okay.
Patrik: They wouldn’t have a clue in LTAC how to deal with 100% of oxygen. No way.
Joyce: Okay. And because they move her and she still desaturates, that’s unstable.
Patrik: Very much so. Very much so.
Joyce: And then that’s a good piece of information.
Patrik: I don’t think that LTAC is on the cards at the moment.
Joyce: I don’t either. But now I got to get a step ahead of them, because I don’t trust them. You saw what they just did.
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Patrik: Yeah, yeah.
Joyce: I have to ask these questions. All right, listen, I’m respectful of your time, Patrik.
Patrik: Yeah, I need to go.
Joyce: Thank you very much.
Patrik: Thank you. Okay, all the best, Joyce.
Joyce: I’ll talk to you soon. Bye.
Patrik: Take care. Bye. Bye.
The 1:1 consulting session will continue in next week’s episode.
How can you become the best advocate for your critically ill loved one, make informed decisions, get peace of mind, control, power and influence quickly, whilst your loved one is critically ill in Intensive Care?
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- How to ask the doctors and the nurses the right questions
- Discover the many competing interests in Intensive Care and how your critically ill loved one’s treatment may depend on those competing interests
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- How to stop being intimidated by the Intensive Care team and how you will be seen as equals
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- How you need to manage doctors and nurses in Intensive Care (it’s not what you think)
Thank you for tuning into this week’s YOUR QUESTIONS ANSWERED episode and I’ll see you again in another update next week!
Make sure you also check out our “blog” section for more tips and strategies or send me an email to [email protected] with your questions!
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This is Patrik Hutzel from INTENSIVECAREHOTLINE.COM and I’ll see you again next week with another update!
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