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 Sister Has a Big Pressure Sore & Is It Because She’s Not Being Mobilized by the ICU Team?
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 Joyce, as part of my 1:1 consulting and advocacy service! Joyce’s sister is still on a ventilator and now
with a chest tube. Joyce asks how far is her sister from coming off the ventilator.
How Far Is My Sister from Coming off the Ventilator?
Patrik: That’s right. You want to know about the bed sores. So, we would look at what’s documented about bed sores. For example, is it documented that evidence-based pressure area care has been done. Evidence-based pressure care is a turn every two to three hours.
Joyce: Let’s say it’s ordered and how do you know it gets done?
Patrik: Often, there’s two ways. As a nurse, you either document in your progress notes, “I’ve turned the patient every three hours,” or what they often have, they have the care plans and they tick boxes, pressure area care, done. Let’s just say, it’s not ticked for a few consecutive days, well what happened? You could also argue that if it is ticked and your sister still has pressure sores, what have they done?
Joyce: You really think we can find that? Look, she was in the ICU for, you know, you saw me from the beginning of this. I don’t know what they did in the ICU. We weren’t there. You know what I’m saying? I don’t even know how much they even moved her. I think they probably didn’t move her for 45 to 50 days.
Patrik: They would’ve moved her in bed. They would’ve turned her, washed her back but probably not often enough.
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Joyce: Also, the height of the pandemic, it’s calmed down but it was in the height of the … Okay, well. I’m going to put that on my notes. I’m going to get the medical, because I’m pissed. We’re going to look into that. We’re going to get into that. This is going to be a separate thing, but what am I doing now? Physical therapy. What else am I advocating now?
Patrik: Let’s just run this through. Let’s just say your sister wouldn’t have pressure sores. Let’s just take that aside for a moment. She would’ve to get mobilized. She would need to get into a chair, sitting up, and that would be incredibly painful for her because she hasn’t been moved for so long. It would be excruciatingly painful for her. Now, you’ve got the added on complexity of the pressure sores, every movement is probably even more
painful for her. But again, it keeps coming back to the range of motion. She will get contractions if they’re not doing that. She won’t be able to bend her arm.
Joyce: No because when the doctor was praying, she took her hand and she put her hand on a … or made this grunting look just by doing this.
Patrik: Can you imagine what would happen if they even try to sit your sister on the edge of the bed? That would be incredibly painful for her. You’ve heard me talk about mobilization, physical therapy from day one. Now, you can see why.
Joyce: Okay, I’m going to find range of motion and I’ll say the nurses do a range of motion. That the nurses have no time to do that. I’ll fight the physical therapy but I don’t think any of these people are skilled enough to put her in a chair. No one will do that.
Patrik: What?
Joyce: Yeah, no one will do that, Patrik.
Patrik: You must be joking.
Joyce: Yeah. I’m dead serious.
Patrik: That’s terrible. I look at your-
Joyce: Yeah, I know but …
Patrik: I look at your sister and I just go, “Yup. Get me another pair of hands and I’ll get her out of bed.”
Joyce: I swear to God, I’d fly you down here to do that. I swear.
Patrik: Anyway, that’s terrible.
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Joyce: What do I do? I want to focus on what I actually could do. So, physical therapy and just fight for that. The ventilator setting, my question is this. Today was the real day that she’s on this particular setting. You’re saying it’s minimal.
Because I kept saying, “When will she get off the ventilator?” They said it’s a long process. They keep saying it’s a long process. The question is, how far do you think I’m off from the ventilator? I will say, I don’t think these doctors have, I feel like our best interest. I really feel like they’re game in. They’re doctors, they don’t deal with any other business side because it’s more corporate. So, I don’t think they have a game plan.
Patrik: Yeah, yeah.
Joyce: My question is, I feel like I have a say but I also can’t … I mean, I’m not a doctor. So, what can say to that? But my question is, I feel like they’re knowledgeable. But what do you think I should do for ventilator? Do you think they’re doing the right thing? What would I ask for? What can I do?
Patrik: Yeah. If they got her to this point, when I look at the picture of the ventilator, if they got her to this point, they must be doing something right.
Joyce: Right. At the other hospital, that girl.. She’s the one that told me, I shouldn’t advocate and she would not bring her down to 40, at all.
Patrik: The numbers-
Joyce: So that’s good. But what else with the numbers?
Patrik: Yeah, the numbers look good. The numbers are minimum.
Joyce: Where do we need to see it for it to be gone? Hold on. Let me just pull up the picture. Where does it need to be?
Patrik: No, it doesn’t … Okay. The numbers can’t really get any lower. What needs to hap- … Because the numbers can’t get lower on this ventilator, that’s why I’m saying, she needs to be taken off the ventilator.
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Joyce: But don’t we have to go down from 18 for the support? Doesn’t it have to be at six?
Patrik: Hang on. Just give me a second.
Joyce: Because that 18 number, she was at 28 last week.
Patrik: Where’s 18? I can’t see any 18. I can see 26-
Joyce: Look, look. Look all the way to the right. Look all the way to the right. You should see oxygen at 30.
Patrik: Yes.
Joyce: Look at those three bubbles.
Patrik: Oh, yes. No, I didn’t see that. I am so sorry. That needs to come down. You’re right. That needs to come down.
Joyce: Right. So, what I’m saying the 30, the 5, and the 18 needs to go to 6.
Patrik: Six or eight. Six or eight.
Joyce: So, we’re halfway to go.
Patrik: Halfway to go, yes.
Joyce: What we’re you looking at?
Patrik: I didn’t see that because it’s too small. Now that you’re telling me-
Joyce: I know.
Patrik: Yeah, no. It’s too … Okay. All right. So, if that’s the case, a few things then.
Joyce: Can you tell me where I’m at now?
Patrik: She’s breathing spontaneously.
Joyce: Okay.
Patrik: Okay. She triggering every single breath. That’s good. We know she’s doing that.
Joyce: Okay.
Joyce: The 18, like you said, needs to come down probably to 8, sometimes even 10.
Joyce: Okay.
Patrik: But let’s just say for argument’s sake, she’s down to 10.
Joyce: Okay.
Patrik: 30% of oxygen, then, she needs to have an arterial blood gas. Do you know what I mean by that?
Joyce: Yes, I do. Yes, I do.
Patrik: Has she had one?
Joyce: She hasn’t had one and in a while. I don’t think they do it often.
Patrik: Yeah, sure. Okay. Let’s just say, she’s breathing, PEEP of 5, pressure support of 10, 30% of oxygen and all the other numbers are the same. Do a blood gas, and if the blood gas is good, take her off the ventilator for a couple of hours and see what happens. However, this is the challenge. I always argue, you can’t wean someone off the ventilator without mobilizing them. I keep coming back to mobilization, physical therapy.
Joyce: Can she sit up by the bed?
Patrik: Sure.
Joyce: So, maybe I could just say elevate her to that point, because they literally can sit like in a bed. So, maybe I can advocate for them to really prop it a couple of times in a day.
Patrik: You can definitely do that. No question. You can definitely do that.
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Joyce: Then, range of motion with physical therapy.
Patrik: Range of motion, but you see, here is the thing. Let’s just say your sister, a couple of people would put your sister at the edge of the bed. She would have to stabilize her upper body. That in and of itself would strengthen her breathing muscles. Because she’s lying in bed all day-
Joyce: But how do I … Here’s the thing. How do I come in doing all this? I guess, I’ll have to really try to see if they’re willing to do it. But that someone’s going to have to … This is pretty aggressive. I love that idea. But someone needs to be able to really feel confident to do that. That’s pretty thing to do.
Patrik: I agree.
Joyce: I know what you’re saying and I would even be one of the people to hold that. But I would need someone to-
Patrik: Instigate.
Joyce: … kind of know things and where they’re going.
Patrik: Yeah. Don’t get me wrong, with the pressure sores, it’s almost a no-go. It’s almost a no-go.
Joyce: So, now what? Now, listen. We’ve spoken about this. I want to get her off the ventilator. Listen, Patrik. I’m going all the way with this. We’re already 120 days into this. I want my sister back. We want her back. Now that she’s mentally responding to us, she wants to live. Does she want to live like this? No. But she wants to be in our lives. Right now, do you believe that if she did not want to be, and know that I’m going to
ask you a loaded question, do you think if she did not want to, do you think she would have control to not do it?
Patrik: Why don’t you ask her? Now that you know she’s awake, why don’t you ask her?
Joyce: How do you ask that question? Do you want to live? I couldn’t ask that?
Patrik: I think you can. You almost have to.
Joyce: What?
Patrik: It’s very confrontational right now, I get that. But I do believe it’s a reasonable question. I think you need to ask your sister that question. Does she want to go through all of this? I think it’s a reasonable question.
Joyce: But how I know if she’s answering correctly?
Patrik: Do you know your sister?
Joyce: I don’t know, Patrik.
Patrik: You think it’s too loaded?
Joyce: I don’t know. So, we come in and we say, “Dear, you can do this. We love you. We’re here for you. You’re never alone. Blah, blah, blah.” How do you say, “Do you want to live?” I mean,..
Patrik: No, it wouldn’t be-
Joyce: … very concrete about not pulling the plug, I’ll tell you that.
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Patrik: Yeah, no. I hear you, Joyce. I hear everything you say. Maybe you don’t need to be as blunt as this, but maybe you should ask your sister, “Do you want to go through everything that it takes to get you off the ventilator?” That’s probably how you should-
Joyce: But I don’t think she knows. Honestly God knows, I don’t think she knows. I really don’t think she like, has no idea.
Patrik: Right. Why do you think that? What makes you think that she doesn’t understand, she doesn’t know?
Joyce: I don’t really think she under … I think very few people understand. I told her, “Do your breathing on your own.” I don’t think she knows the complexity where she is with this situation. I don’t know if she knows she has chest tubes. I don’t know if she knows she has a rectum
tube. I don’t know how … I know she’s there. She’ll talk to you and then, she’ll fall asleep. She’s not like, my sharp cookie of a sister that she was once. I want her to fight. But my question to you and the purpose of this phone call is, where am I in the game and can I really get her out of this? I mean, I know you can’t answer that.
Patrik: No, no.
Joyce: Do we have a choice. Can we have an option to … She won’t be the same sister. But can I have her sitting down in any capacity next year at my house?
Patrik: I think so. I think there’s a chance for that. I guess, it depends on what you can accept. Can she sit at your house, for example with a ventilator? Can she sit at your house with tracheostomy?
Joyce: No, not on ventilator.
Patrik: Yeah, yeah. Look, I tell you what I believe is possible for your sister. It is possible for your sister to get off the ventilator. It will take time. Those pressure sores need to heal. But in the meantime, they need to get the range of motion going. Someone needs to do some breathing exercises with her. But I do believe that you as a family need to slowly start talking to her about what’s happened and where she is in that trajectory,
I do believe.
Joyce: How do I say that? Where is she though? I don’t know where she is.
Patrik: No, no. But you should explain to her, “Look, this is what’s happened. This is why you’re here. Now, you’re stuck on a ventilator.”
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Joyce: But, I don’t know. I mean, she knows she’s on a breathing machine but … I don’t know. I try not to say too much. I know this sounds really stupid. But I try not to focus on that.
Patrik: Yeah, I know. I know. It’s a tough one, Joyce. I don’t have all the answers.
I’ll tell you where I believe she is in this recovery. I do believe she can come off the ventilator but it will take time. Those pressure sores-
Joyce: How much time do you think it will take?
Patrik: I do believe the pressure sores need to be healed so she can start getting out of bed.
Joyce: How long do you think she will be on the ventilator, still?
Patrik: Let’s just say, the pressure sores were healed and she could start getting mobilized, maybe a few weeks. Maybe a few weeks. But if she’s not getting out of bed, it’ll be very difficult. I think I can sort of paint a picture for you. She’s lying in bed all day. Just by sitting her on the edge of the bed and strengthening her upper body which help her-
Joyce: Listen, I’m going for a visit tomorrow. And you know what I’ll do, Patrik? I will set up a call with you, now that I have these visits, I can manipulate our calls. And what I can do is, I can … Well, you don’t have Face time. I could bring my laptop in and could do a Zoom call with you at the hospital. I can schedule it to where we can maybe have a nurse come in and we just kind of-
Patrik: Yeah, sure.
Joyce: … see if they’re open for that. I’ll get a good nurse that day. I’ll figure out something where we can..
Patrik: Yeah, sure.
Joyce: Now that I can go in, I can manipulate a little bit more the situation. Maybe I could put the screen there and you walk us through it and you’re going to have to hold my hand, tell me what to do because I am determined to get my sister off this.
Patrik: No, no. It’s-
Joyce: I’m just running and not knowing where I’m running to. And depending who it is, one lady tells me, “There’s no hope. Give up hope. Unplug.” I’m not talking about unplugging ever again.
Patrik: No, no. Joyce, what I’ve done while we were talking, I’ve sent you a link in WhatsApp. I sent you a link to an interview that I’ve done with a client a few years ago. I really want you to listen to this interview.
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Joyce: Okay.
Patrik: You really need to listen to that. There’s a gentleman who was, he must’ve been 60 or 62 at that time when he ended up on a ventilator in 2013. It’s a long time ago. Ended up on a ventilator for a year, for a year. He came over eventually.
He’s now in his mid-80s. He’s living life.
Joyce: So, you think my sister can get off the ventilator? We have hope, right? We were better than we were a couple of months ago.
Patrik: You see, right now, you remember. I do remember, it was our second Zoom, I did say to you, I know I can help you but I don’t have a quick fix. And I still don’t have a quick fix. Yes, I believe your sister can come off that ventilator. I believe that. But it’ll take time. It won’t happen if she can’t mobilized.
Joyce: Okay. Right now, I think the biggest thing is get the range of motion. That, I can do.
Patrik: Yes, yes.
Joyce: Get the range of motion going. I want the range of motion going and she’s still on pressure support, then I will add, “Hey, prop her up all the way in the bed.”
No one’s really going to pick her up and take her right? But they can move the bed up. They could sit her up all the way up, right?
The 1:1 consulting session will continue in next week’s episode.
Kind regards,
Patrik
