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
My Brother is Not Waking Up in the ICU. Why are they Pushing Me Out of the ICU During Hand Over? What Do they Have to Hide?
You can check out last week’s question by clicking on the link here.
In this episode of “YOUR QUESTIONS ANSWERED” I want to answer a question from one of my clients Megan, as part of my 1:1 consulting and advocacy service! Megan’s brother is in ICU
ventilated and Megan is asking, why are they covering the worst-case scenario for her brother?
My Brother is in ICU Ventilated. Why Are They Covering the Worst-Case Scenario for my Brother?
Patrik: The last thing you want is a fluid overload on the lungs. That’s the last thing you want. And your brother with a history of kidney failure, right? They would deliberately keep him dry because of the kidney failure and because of weaning him off the
ventilator. Now, it sounds cruel, but in ICU every patient has a daily fluid balance. So, it’s being measured, what’s going in and what’s going out.
Megan: What’s coming out..
Patrik: Yeah, yeah. There are a few patients in ICU who need to have a positive fluid balance, but the overwhelming majority of patients in ICU need a negative fluid balance.
Megan: A negative.
Patrik: Meaning there needs to be more going out than going in.
Megan: Okay. Okay, I understand.
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Patrik: Does that make sense?
Megan: It does, because they talk about the negative and the positive. They do actually talk to me about that, so…
Patrik: Yes.
Megan: Yes.
Patrik: Yes, right?
Megan: Yes, it makes sense… Yes.
Patrik: Right? So, it’s not nice, but it’s almost imperative in ICU in order to wean somebody off the ventilator.
Megan: Okay, so we’ve just got to go with it, and live with it, and realize it’s in his best interest.
Patrik: Yes, yes. And also, it’s not ideal that they’re managing the sodium level, but it’s necessary and it can be managed.
Megan: Okay. Yes. And I said to them, Patrik, many times, “Why don’t you speak to the renal consultant who knows all about his baseline and everything? Why don’t you…” But they don’t. I don’t know why they don’t. It’s the same hospital.
Patrik: So, you’ve asked-
Megan: It’s been referenced… Yeah, renal surgeon. I said, “Is Dr. Collins upstairs? He’s been with him for eight years. I come with Ryan, we go together. He’ll tell you what Ryan’s baseline is, he’ll tell you about Ryan’s history. But they don’t seem at all interested, I don’t know why.
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Patrik: Well… And that renal doctor knows Ryan from the past?
Megan: Yes, very well, yes.
Patrik: Look, look, look. I’m glad you mentioned that, really glad you mentioned that. Well, if he knows Ryan, he will have a very different view on everything that’s happening compared to them because he knows Ryan as a person.
Megan: Oh yes, of course, yes.
Patrik: Right?
Megan: Yes.
Patrik: And that’s why I think it would be great if you can get him in. And I can see their reluctance because he would probably stand up for Ryan.
Megan: Yes. And that’s probably what they don’t want.
Patrik: Yeah. Yeah.
Megan: Yes, because whenever Ryan sees Dr. Collins. I mean, Dr. Collins always chumming with Ryan.
Patrik: Right. So, if I was you, I would keep… And that’s why we talked about this yesterday as well in terms of getting his GP in, get the psychiatrist in. Make him a person. They don’t want to make him-
Megan: Make him a person. No, they don’t want to. They want to look at him as somebody who’s just a bed blocker with mental health problems and cancer.
Patrik: Correct.
Megan: Enough, the time and effort that’s been spent on him.
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Patrik: Correct.
Megan: That’s how I think they… Yeah.
Patrik: Yes. So, the more support you can get, whether it’s the renal physician… I also think potentially a respiratory physician might also be good, but he wouldn’t have one, would he?
Megan: No. No, he’s never had any… His breathing, because of the smoking his breathing hasn’t been fantastic, but it’s never been critical to require such a… To be under a physician.
Patrik: Yeah, yeah. Yeah, yeah.
Megan: I’ve always said to Ryan, “You’ve got to stop smoking. You’ve got to stop smoking because this is not good for your lungs and in the future it’s not good, so…” There’s always been lots of pressure on Ryan to stop, but unfortunately, I think the mental health issue hasn’t helped, really.
Patrik: Yeah, sure, probably hasn’t helped. But again, it is what it is for now and you can’t change it, but for now, I would just really try and get other people in if you can.
Megan: Yes.
Patrik: Because they’re trying to push this in a certain direction. There were some positives last night when I spoke to the nurse. The positives were that she was talking about seeing the organ failure.
Megan: This is good.
Patrik: Right?
Megan: Yes.
Patrik: So, she wasn’t making it any worse than it actually is, right? So, she was clearly suggesting that it’s only single organ failure, right? And that’s good because at the end of the day all they need to do is they need to get him off the ventilator and then get him out of ICU.
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Megan: That’s all they need to do. That is all they need to do, Patrik. And that’s why I find… It’s not like everything else is failing, is it?
Patrik: No, but getting him off the ventilator can be a challenge.
Megan: Is a big thing, yeah.
Patrik: So-
Megan: Massive challenge.
Patrik: That’s right. That’s right. So, that’s definitely a concern. Yeah, but it’s a plus that she said, “Well, it’s single organ failure.” It’s also a plus that irrespective of what they said yesterday, that they got him out of bed again today.
Megan: Yes, that they have a plan.
Patrik: That’s right.
Megan: That they have a plan.
Patrik: Exactly. So, that’s positive. I mean, you know that it’s never what people say, it’s always what they do.
Megan: Do, that counts.
Patrik: I mean, what do I mean by that? I mean, yes, they’re saying it’s all doom and gloom, but at the end of the day they got him out of bed again and they-
Megan: They’re still quarrying. The physiotherapists have come in and they’re putting plans together and… You know?
Patrik: Yeah. Absolutely. Yes. And I liked what you said in your email that they put up a plan in the bed space. That’s all positive. You’re not going to do that to a dying patient.
Megan: No. That’s what I thought too. It’s quite detailed as well. Physiotherapy, exercises, resting. Six hours CPAP. It’s a balance between strengthening him and his lungs and CPAP.
Patrik: Absolutely.
Megan: That’s what was quite… Yeah.
Patrik: So, that’s-
Megan: He’s not going… Go ahead Patrik. Go ahead.
Patrik: So, that’s all positive.
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Megan: Yes. It is. It is, Patrik. I mean, I often say, he did eight hours CPAP three days ago, but then yesterday, I think it was only five. But she’s wrong to say he’s never done eight hours. It’s not true. She’s wrong.
Patrik: That’s all right. She probably doesn’t know the ends and outs.
Megan: No.
Patrik: So, what have they done on Wednesday… I’ll tell you what they’ve done. They’ve covered their worst-case scenario. Their worst-case scenario is he’s not getting any better, right? And then they can tell you, “Oh, we’ve told you.”
Megan: They’ve told me.
Patrik: Right? “We’ve told you.” So, they’re just covering their worst-case scenario. So, just turn this upside down for a moment. Imagine they would have come to you on Wednesday and said, “Oh, Ryan’s definitely getting out of ICU alive. He’ll definitely get off the ventilator”
They can’t say that.
Megan: No. No, they can’t.
Patrik: Right? So, they’re just covering their worst-case scenario, that’s all.
Megan: Yes. You think so? You don’t think they’ve written him off yet?
Patrik: Well, they haven’t written him off because… Again-
Megan: Because they’ve got the plan. The plan-
Patrik: That’s right. And also, if he wasn’t breathing on CPAP, if he wasn’t having time off the ventilator, I’d say, “Okay, well there’s a real chance he might be ventilator-dependent for the rest of his life, but…” He’s moving forward, baby steps. And she said how weak he is. But, he’s moving forward. And you’ve got to rub that into their face too saying look, he’s making small steps, but steps.
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Megan: But steps nevertheless. The thing they keep throwing back at me is the weakness… And I said to them yesterday, “He is weak because you have kept him in bed all this time!”
Patrik: Yes.
Megan: “How can you expect him to be strong?”
Patrik: Yeah.
Megan: “It’s unfair.” I said that yesterday, I was quite upset.
Patrik: Yeah, good. Good.
Megan: Yes. I said, “It’s unrealistic. He’s in bed for months and you suddenly expect him to be all strong and coughing up sputum,” it’s just not realistic.
Patrik: No.
Megan: I don’t think anyway, I don’t understand, Patrik. It doesn’t seem realistic to me.
Patrik: No, it’s not realistic. And again, a good ICU starts mobilizing patients early.
Megan: And they didn’t.
Patrik: Right. Having said that, if somebody is on dialysis it is more difficult to mobilise them but it’s not impossible.
Megan: Patrik, he’s not on dialysis.
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Patrik: Yeah, yeah, no.
Megan: He’s not on it.
Patrik: But he was.
Megan: No, he was never on it. No.
Patrik: What? I thought he was on dialysis.
Megan: No, no!
Patrik: Okay. Okay.
Megan: No, he’s never been on it. He’s got bad kidneys. And that’s why I was saying to them, “He’s never had… it was the last eight years… It’s always been a bit healthy, but this keeps the consultants happy. And that’s why I ask them about the kidneys every day. And I ask them about dialysis, and they said, “No. Only if his urea and-
Patrik: Creatinine.
Megan: Creatinine drop or go up,” then they’ll consider it. But at the moment he’s peeing well and they’re happy with his kidneys from what they’ve told me.
Patrik: Right.
Megan: So, there’s been no dialysis and no kidney failure as such. His kidneys have functioned all the time.
Patrik: Okay. That’s good. That’s good.
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Megan: Yes, yes. It’s good, isn’t it? Because it’s another organ that’s not failing in that sense.
Patrik: Absolutely. Absolutely. Absolutely. And the other thing that’s important in this… When people talk about multi-organ failure, you’ve got to bear in mind, probably the most important organ, the heart, seems to be very strong.
Megan: Yes. He had one problem with his heart when he first gets in there, but he’s had no problem since.
Patrik: Yeah, yeah. So, that’s all important to put this in perspective. And again, maybe as a next step… You don’t have to use it now, but as a next step… As I said, there is this family that I’m working in Chicago. Their dad is 76 and has been in ICU since May. He left ICU in the last couple of weeks. And he’s the one who survived seven cardiac arrests. The other thing that I’ll do when we come off this call… I’ve done an interview with a gentleman in Colorado a couple of years ago. He must be 82 now. Cutting a long story short, he was in ICU for about a year, right?
Megan: A year! Right.
Patrik: Yeah.
Megan: Right.
Patrik: And he was basically weaned off the ventilator over a 12 month period, right? He’s a remarkable, remarkable character. And now they’ve done a quick documentary about him that I’ve seen the other day, some local TV stations in South Dakota, or whatever. He’s in South Dakota.
Megan: Yes.
Patrik: Remarkable, remarkable man. I just think anybody in a situation like that needs to listen to this interview and potentially look at this documentary. It’s something you could play to Ryan.
Megan: What a tremendously good idea. That would be wonderful, because Patrik when you consider Ryan is 70, this gentleman is 80-
Patrik: He’s now 82.
Megan: 82.
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Patrik: It was a couple of years ago when he first contacted me.
Megan: So, that’s in his late 70s. And also, a year. Ryan’s been in there a month. That would give him tremendous heart.
Patrik: Absolutely. Absolutely. And yeah, he has a remarkable character. And he’s making sure that his story gets out to the world, and that’s important.
Megan: It’s very important. And you know what I can do, Patrik? I can play it on my phone and put it on the headphone. Oh, I need new headphones because I’ve just got this iPhone 7. But I’ll get some new headphones and I’ll put it on his ears and they won’t even know what he’s listening to.
Patrik: That’s right. Yeah. Yeah.
Megan: Do you think? Good idea?
Patrik: Absolutely. Absolutely. Look, you can even tell them what he’s listening too. It doesn’t matter. It’s up to you. And they know by now you’re not giving up and-
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Megan: Yes, they know I’m not giving up. I mean, they do know that. And I’d be interested to see how they respond to me after your call.
Patrik: Right. Right
Megan: Whether they’re a bit more hostile or whether they’re still friendly.
Patrik: Right. Look. Look-
Kind Regards
