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
You can check out last week’s question by clicking on the link here.
In this week’s episode of “YOUR QUESTIONS ANSWERED” I want to answer questions
from one of my clients, Albert as part of my 1:1 consulting and advocacyservice!
Albert’s sister is on a ventilator in the ICU and Albert is asking how can his sister wean off the ventilator in ICU.
Patrik: Yeah, I’ve seen it, I’ve been part of it. I know what they’re like. It’s frightening and it’s terrifying. And that’s why I’m saying, from their perspective, they’re so busy. They have people queuing up for the ICU bed. Their problem will be solved if your aunt or your sister has gone, whether she’s dying or whether she’s going to another place. They just want to have the problem solved,
unfortunately.
Val: For them, she’s just another patient, yeah.
Patrik: Another number, another number. That’s it.
Val: Yeah.
Patrik: They are so desensitized. If someone dies, well, it’s just another number for them, unfortunately.
Albert: Yeah. You know what they do today? The case manager, he doesn’t have access, he can’t even do that. That’s illegal. He went to our insurance, he called the insurance, and they want us to stop that insurance because they want him to send her somewhere else because of that first insurance. They want us to cancel that insurance,
they pushed us. So, he makes sure he called them. And then he called me and he said he went to my brother-in-law to let him to sign that paper he got from them. And he said, oh, he called me actually. And he said, left the message on my answering machine, he said, “I have a letter from the insurance company, so your brother -in-law, he has to sign it in order to cancel it.” I say, “No, it’s not going to be cancelled because I know it’s going to be cancelled on the first.” So, he’s not supposed
to do that, even thru the insurance. That’s illegal.
Patrik: You got to watch every one of their moves. You got to watch every one of their moves very carefully.
Albert: Yeah.
Patrik: If people improve and they can get out of Intensive Care Unit (ICU) quickly, fine. But when people don’t improve and they stay in ICU for prolonged periods and have complications, that’s when they have a big, big problem, from their
perspective.
Val: I guess it goes back to the main thing you mentioned. The number
one thing you said was, how can we get her off the ventilator? That’s the first thing. And then, what do we do
at this point? What do you suggest? How do we get her off? How can we help her? I don’t know much, but is the leak, what kind of effect does the leak have? Does it make her more fatigued? Is it affecting her ability to improve so she can get off the ventilator and she can exercise and things like that?
Patrik: Most likely. Let me ask you a few questions. Is she mobilizing? Is she getting out of bed?
Albert: No.
Val: They are making her sit for about six, seven hours a day.
Patrik: They are?
Val: Yeah.
Albert: Yeah, but they have to carry her.
Patrik: Okay, great, great. So, they’re getting him out
of bed in a recliner chair or something like that?
Val: Yes.
Patrik: Great. Okay, that’s great. That’s good to hear, that’s good to hear. That’s
the first step. Okay. And they’ve been doing this for the last few weeks?
Val: Oh, yeah. She’s been doing that, almost on a daily basis.
Patrik: Okay, fantastic. And she’s tolerating that?
Albert: Yes.
Val: Yes.
Patrik: Okay, fantastic, fantastic. And her brain is working, she’s not confused?
Val: No, no. Just lately though, more … One of the problems is the sleeping
pattern. I think at nighttime she’s more alert and when they make her sit. Lately, this is fairly new, she wants to sleep kind of thing. So, other than that, yes, she does about five, six, sometimes she does seven hours split to two, twice. Not much often, but sometimes she does that.
Patrik: Okay.
Val: So average, on a daily basis, she puts in probably four or five hours a day sitting down.
Patrik: Okay, that’s good. That’s really good to hear. Okay. So
then coming to your question with the leak. A leak is not a good thing, but it also depends what ventilator settings is he on. So, when someone is ventilated, there’s a number of things you need to look at. Is she ventilated with full support from the ventilator, or can she trigger some breaths herself? So, what would be very helpful for me is to get a picture of the ventilator. That would be very, very helpful. So then I can tell you, okay, how far away is she from being weaned off the ventilator. There’s also a good chance that they might change the
settings a couple of times a day.
Val: Right.
Patrik: Sometimes they may control it 100%, so they give all the help to her. And then during other
times, they change the settings and then she has to breathe by herself a little bit more.
Albert: 40, 35. Today’s 40. And she’s breathing by herself half of it, and then she’s breathing half from the machine.
Patrik: Yep.
Albert: And then the last time they put her today, for example, they put her in spontaneous-
Patrik: Great.
Albert: For 5 hours.
Patrik: For 5 hours? Okay.
Albert: For 5 hours.
Patrik: For the first time? Or has she had spontaneous before?
Albert: No, she was doing the spontaneous for 10 hours, 12 hours before. Overnight even.
Patrik: Great, okay. Now we’re talking, now we’re talking here. Okay. So, with the spontaneous, that’s been going for weeks or for
days, do you know?
Albert: No, it was for weeks. But she was down because of the fluid, so they have to change it. And then she has pseudomonas, from the machine.
Patrik: Yeah.
Albert: They have to put it down. But now she’s okay, so they started today. Yesterday they started for two hours, today she was breathing for five hours. And she was sitting for how many hours?
Albert: Six hours on the chair.
Patrik: Okay, good, good, good. So those are great news. That’s good news to me.
Albert: Yeah.
Patrik: Many Intensive Care Unit (ICU) are not even mobilizing people. Without mobilization, you can’t wean someone off a ventilator. So that’s all good news to me. His brain is working. Yes, issues with day and night rhythm. Hopefully they can
sort that out. Is she having, for example, showers during the day? Is she having at least a shower once a week or something like that? Are they doing that?
Albert: They give her every day on the bed, because she
can’t turn herself. And then the bath and everything, they will give her over there. Other than that, that’s the shower they give her.
Patrik: Sure.
Val: That’s that shower, yeah.
Patrik: Okay, okay. No, that’s fair enough. That’s fair enough. Okay. So, I would argue, so the next steps really are, if she can tolerate the spontaneous breathing, maybe yesterday she did five hours, maybe today she can do six hours, maybe tomorrow she can do seven hours and so forth. And once she comes to the point where she can do it 24 hours a day, that should be the point where they should wean her off the ventilator and should put her on the mask that I mentioned earlier, just with a little bit of oxygen, humidified oxygen. And maybe she can only do five minutes in the beginning, back on the
ventilator, maybe the next day she can do 10 minutes. It can be a slow process. But most importantly is that there’s progress. And it sounds to me like there is progress, but it’s probably not quick enough for them.
Patrik: It’s not quick enough for them. To me, it sounds like there is progress.
Val: Mm-hmm.
Patrik: But the heart comes into play here. The heart needs to be carefully managed, the fluid status needs to be carefully managed. If they’re
giving her too much fluids and she’s not making enough urine that could set her back. Because she then she would have fluid buildup on the lungs or pleural
effusion and that could set her back.
Albert: So, what do you suggest now? What do you-
Patrik: I’ll tell you what I suggest. If you think she’s making progress, and it sounds to me like she’s making progress, she needs to stay where she is. So, imagine someone making progress, going to another facility with new people, new team. It sounds to me like some of the things they’re doing are working.
Val: Mm-hmm.
Patrik: It’s madness, sending someone to another place when they are at their most vulnerable. That is madness.
Val: Mm-hmm. Yeah, and that’s why I ask. She is making progress, like you said, but incremental and slow. And sometimes there’s bumps here and there.
Patrik: Of course, of course.
Val: So, for example, the other day her creatinine went up, but I think it went back down now to 1.4, if I’m not mistaken. And then the fatigue has been … This is fairly new, the fatigue has been coming on. And I don’t know, for some reason, I don’t know if it has to do with the leak or the night sleep or the pattern. I’m not sure where is that. But another thing too, we have been asking that, I know it’s the
ICU, she can’t do full physiotherapy, but some kind of physiotherapy. And it’s been a while since they came. So just as a family, my aunts, uncle, they give her a small exercise with her hand and things like that. So at least she’s moving.
Patrik: And other than that, she’s not getting any physical therapy?
Val: No.
Patrik: That’s bad, that’s bad. Who is getting her out of bed? Is that the nurses?
Albert: Yeah, the nurses. But today I was calling them and then asked them why she didn’t get it. And then they say they started today because I was calling them and asking them. I kept asking them, I say, “Why for two weeks? Why?” And they-
Albert: Yeah, she gets one today. So, Patrik, one question, we’re going to come back to you anyway, but one question that I have asked now, from now on. What we do is we have to do for the lawyers, attorney general, now we just go to the
lawyer-
Patrik: I would, number one, sort out the power of attorney. A family lawyer should be able to help you with that.
Albert:
Okay.
Patrik: In terms of keeping her where she is, just let them know you don’t want to send her anywhere else.
Albert: Okay.
Patrik: If you can, send me some medical records or a picture of the ventilator.
Albert: Yeah.
Patrik: It would be good to see a report from a cardiologist, then I could draw up a letter or an email that you can send to the hospital and say, “Look, these are the reasons why we don’t want her to go anywhere else.”
Patrik: I am very pleased to hear that you haven’t heard from the insurance. If the insurance contacted you, I would be worried. But if insurance hasn’t contacted you, it’s just the hospital pushing, that’s all.
Val: Yeah, it’s just the hospital politics side. You came up with the letter, that’s what I was going to ask you. So we’ve told you what the medical team, the doctors, what they’ve been saying to us. So for example, let’s say you draw us a letter, where would we send it? To the president of the hospital?
Patrik: Yeah, something like that, something like that.
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