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 Tara, as part of my 1:1 consulting and advocacy service! Tara’s mother has a tracheostomy in place and whilst in the process of weaning her off the ventilator, Tara is asking on how to keep her mom in ICU despite ICU’s plans to send her to LTAC?
My Mom is in ICU with Tracheostomy and Whilst Being Weaned Off the Ventilator. How Can I Keep my Mom in ICU Despite Their Plans to Send Her to LTAC?
“You can also check out previous 1:1 consulting and advocacy sessions with me and Tara here.”
Patrik: I think you should. Who’s overseeing the medical care? Who is that? Is that a respiratory physician? Is it a pulmonologist? Who’s overseeing your mother?
Tara: Yes, there’s a pulmonologist. There’s a regular house specialist doctor, whatever, that comes through, and then there’s also a pulmonologist.
Patrik: Who’s the driver behind getting her back to where she was before? Who’s driving that? Is it the pulmonologist?
Tara: You mean moving her out of the facility?
Tara: The case manager called me today and that’s the first I’ve even talked to her. There have been other representatives from the St. Jude nursing home who came in and asked me if I wanted to go back there. Then a representative from Criticare, which was where she was for a whole month previous was also there. And she was trying to get her to go back in over there and they said she doesn’t qualify. Because I figured, if anything, that would be better than the nursing home.
Patrik: Yeah, right.
Tara: I figured it was worth looking into.
Patrik: Right. Look, Tara, I can’t be more blunt. Looking after someone. . .
Tara: I understand, but how are we going to keep her there?
Patrik: Just before I come to that, I’ll just give you one more thing. Looking after somebody on a ventilator is like flying a plane. It’s a skill. It’s a skill you need to learn and quite frankly, the LTACs are designed for health insurances. They’re designed for ICUs, they’re certainly not designed for patients. Right? Yep. So number one, nobody can force your mom to go out there. Nobody. Okay, that’s number one. It’s also a mindset thing, Tara. If you think they can send your mom out, they will. If you think they can’t, they won’t. So number one, start with your own thinking. Okay? Number one, don’t take no for an answer. Just put up the barriers. Just put up the barriers for now.
Number one, nobody can force your mom to go out there. Number two, what is more convenient for you in terms of proximity? It’s the hospital where she’s at at the moment, is that convenient for you in terms of proximity? Is it far away from you?
Tara: Well, you mean the hospital where she’s at?
Tara: It’s an hour and a half away.
Patrik: Oh my goodness.
Tara: Yeah, it’s not convenient, but it’s doable.
Patrik: Yeah, but it’s not ideal.
Tara: I mean, all right. Let’s start back again though. I mean, the ultimate goal is to get her weaned from the ventilator. So wherever she could go and have that happen, I’d be willing to drive halfway across the world. If I thought she’s in good enough care that I don’t have to be there all the time, that would be fine too. But, I mean, I had thought about, like, Vermont General Hospital.
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Patrik: I believe so. I believe so.
Patrik: We’ve had clients in the past at Vermont General Hospital. They seem to know what they’re doing, but at the end of the day-
Tara: But I don’t know if they would take her at this point.
Patrik: Right, right. Is that closer to you, or is it just because of the reputation?
Tara: That’s about two and a half to three hours, so about doable.
Patrik: Right, okay. Okay. Now, let me ask you this. Do you think that where she’s at the moment? Do you think they can wean her off? Do you think they have the skill?
Patrik: Why not?
Tara: Well, I don’t know if they have the skills or not, but they definitely do not want to take the time to do it.
Patrik: Okay. Because given that they changed her ventilation mode quite quickly, somebody in there must know what they’re doing.
Tara: That was the doctor in ICU, yes.
Patrik: When did they send her out to this weaning unit? How long ago was that?
Tara: The one at Criticare?
Patrik: No, no. I mean. How long was she in ICU for?
Tara: I’m sorry, I didn’t understand it. How long was she what?
Patrik: How long was she in ICU for, this admission?
Tara: Oh, just this last time?
Patrik: Yes, yes.
Tara: This last visit? Let’s see, we went to the emergency room Saturday, she was then admitted to ICU. So let’s say Saturday afternoon, Sunday, Monday, Tuesday, she went to the step down, so three or four days.
Patrik: Yeah, sure, okay. Okay. Would you say, she keeps improving or has she gone backwards, what would you say?
Tara: Well, I thought it was a major improvement but when she was at Criticare, the way they were weaning her. She wouldn’t even last a minute before they had to put her back to full control. So now in ICU, it’s the volume control, she went the very first day eight hours and the second day 12 hours.
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Tara: But with that being said, now I’m starting to understand the whole picture. Just because she did it, it doesn’t really mean she was doing it well because the CO2 came back.
Patrik: Yep. Yeah.
Patrik: When was the last time you’ve had an update on the CO2?
Tara: I have not had any recent update. See, I’m partly confused with that too because they give you the daily report, it has the O2 level. But that’s not that you always talked about, which was the blood gas.
Tara: So the last blood gas I have is whatever I gave you, Sunday, or Monday, or something like that.
Tara: But I asked if they were going to do one Friday before I left and they were supposed to look into it. The nurse said she was going to talk to the doctor but like I said, I haven’t been up back to the hospital.
Tara: So I don’t know if they’ve done one or not.
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Patrik: Sure. At the moment, are they more passive? Are they sitting her out of bed? Are they doing breathing exercises? What are they doing at the moment?
Tara: Physical therapist came in during that last weaning and had her sitting at the side of the bed. Yeah, and that’s about it. Nothing else.
Patrik: That’s not enough. Are you there every day?
Tara: I am there most days. Like, Thursday, Friday, Saturdays are my work days, so those are the days that’s really hard to be there. But the other days I can. When she was weaning, and oh, I think I sent you the pictures of the monitor. Some of the time it would be almost flat, like she was barely breathing, so I’d look over and I’d see that. And I said, Mom, you need to flap your arms up and down, try to wiggle your legs and stuff like that,” and she would. That’s when her volume would go right back up.
Patrik: Yes, of course.
Tara: I mean, really up. I was like, amazed.
Patrik: That’s why I’m saying, Tara, mobilisation, that’s all I have to say to them.
Tara: That’s why I want to get her home. I was thinking this new environment where it’s considered part of the nursing home, but it’s still your own home. So I thought that way.
Patrik: Yep, yep.
Tara: We would have the ability to come in with our own team of people and try to mobilise her more.
Patrik: Yep. Look, I’ll tell you, closer to home obviously is the goal, and at the same time, you’re looking at these long-term acute care facilities who are supposedly specialised in ventilator weaning. Now you know that they’re not. Right?
Patrik: Now imagine you’re going to a nursing home, you’re trying bringing your own team. You know, it’s not going to happen, most likely. I don’t want to be negative. That’s why, I tell you, the Vermont General Hospital could be an option, definitely. We’ve had a client last year at the Vermont General Hospital somewhere similar situation. Gentleman in their 70s was on there, they had a stroke, and ended up on a ventilator. We were fighting tooth and nail to keep him at the Vermont General Hospital rather than getting him to LTAC. And they did eventually succeed in weaning this gentleman off the ventilator and avoid LTAC. How can you argue on that level? Well, it’s as simple as you would have seen by now, moving your mom around is very stressful for you and your mom.
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Patrik: Right? Number one, it’s continuity of care, right? Number two, so continuity of care is important and it’s always an argument to be made in a situation like that. Right? Number two, moving your mom again to another facility is very stressful. Now, given that she bounced back to ICU once, how high are the chances it will happen again? Well, the chances are there. Why would you move her again to this other facility with the risk of her bouncing back to ICU, right? Starting this whole exercise over again, which again, would be very stressful. Can you just remind me, what’s the diagnosis when she went back to ICU this time? Was it sepsis?
Tara: Yeah, the tracheostomy was actually pressing against the inside of her throat, cutting off the air, malfunction.
Patrik: Right, right, right. Okay, so here we go, Tara. Here we go. This is another sign, those long-term care facilities who are supposedly, you know, skilled facilities to wean ventilation, they can’t even handle a tracheostomy. Right? They can’t even handle a tracheostomy, that is why she ended up going back into ICU. This is a very good argument to be made. Why would she go back there if they can’t even handle a tracheostomy? That’s what I’m saying. Looking after somebody with a ventilator and a tracheostomy is like flying a plane. You can’t just pick anybody off the street and let them do that work.
Patrik: You can’t just pick anybody off the street and say fly this plane. It’s the same with somebody on a ventilator. It’s a skill. They simply don’t… So with everything that I’ve said so far, with not moving your mom around, bouncing back into ICU, because they can’t handle a tracheostomy. That’s a red flag in and of itself.
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Patrik: You have every reason.
Tara: That’s basically what I said to that lady but she’s just saying, well, she can’t stay here.
Patrik: You’ve got to counteract that, and say, well she can. You’ve got to change your thinking, Tara. The first thing, if you think they will send her out, they will send her out. If you think they won’t, they won’t. Let’s keep her there until you found a better solution. But you know that she’s much safer where she’s at the moment compared to where she would go back to. Would you agree with that?
Tara: Right. Yes.
Patrik: Right, right. So let’s work on that. That case manager is not a clinical person.
Tara: No. I have to agree. She was rude to me and I’m sitting there thinking, I’m pretty sure that our insurance has paid for your salary for the length of time that my mom has been in your hospital.
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Patrik: So what we could do, Tara, is, I would be very happy to get on the call with you with this social worker or case manager, whatever, and very happy to talk to the doctor. Making that line of argument that I’ve just made with you. Right? Right? I mean, seriously. I can’t stress this enough, Tara. Looking after someone on a ventilator with a tracheostomy is like flying a plane. It takes years of training. But they’re not telling you that.
Tara: Right. Well, she did, but she said that, you know, that you would have to move to the nursing home, and then the nursing home would work with you on getting your mom either home or whatever environment you want to go to and get the training and all that. But yeah, it’s basically correct. She said it’s going to take a long time, therefore, she can’t stay in the hospital for that period of time.
Patrik: Forget about it, just ignore.
Tara: If we wanted to do it on her own.
Patrik: Just forget about it for now. Just keep ignoring that and just keep telling them. Look, Tara, in situation like that, you will have to be very persistent and you can’t take no for an answer until you found a better solution. Right? I don’t have that better solution yet. But the reality is that within a week, she’s gone from being fully ventilator dependent to a ventilation mode where she’s doing most of the work. Now, that’s massive improvement. That’s number one. That is with the background of her going from LTAC to ICU, which is, first of all, it’s a deterioration. But then, secondly, all of a sudden she’s improving. Because somebody looks at this and thinks, hang on a sec, this can’t be right. Because they know what they’re doing.
Tara: Right. Yeah, I mean, you’re right.
Tara: So I guess the only reason that I wanted to bring her home was opposed to going to a nursing home. If they’re going to kick us out of the hospital, I was like, I do not want to go to a nursing home. Therefore, I was trying to make arrangements to come home in some way or shape or form. So you’re saying, don’t even think of that for the moment? Just try to keep her in the hospital and continue weaning?
Patrik: That’s what I would suggest, because this ventilation mode.
Tara: You don’t think it would be possible to try to wean her at home?
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Patrik: Yes, I think it would, but you would have to have a team of ICU nurses. I think it’s possible, but you would have to have a team of ICU. Which is, we’re doing that here. I can’t help it with that, where you are. We’re doing that here. We run a service here where we have patients home on ventilation but we have ICU nurses coming into the home. We don’t have a team of lay people. That’s what I’m saying.
Tara: Right, right, right.
Patrik: Look, I’m all at the home care. I’m in the home care business, Tara. I’m all for it. But it’s got to be the right people, and it’s got to be the right work up to this.
Tara: We just don’t have the resources to bring her home, do we?
Patrik: Right. Not yet.
Tara: I mean, we’re interested in hiring somebody on the side that could do some of this work.
Patrik: Absolutely. Absolutely.
Tara: If we have to.
Patrik: Yeah, I understand. I understand. But let’s look at this bit more practically at the moment. Look, as I said, I’m all for home care. I believe in home care more than anything. But you got to look at, number one, the clinical realities, and number two, at the resources available at the moment. Now, the ventilation mode your mom is in in the moment is one step below where she can come off the ventilator.
Patrik: Right? So that’s what I’m saying. The improvement in the last week, going from LTAC to ICU, overnight she was in different ventilation mode. Which could be a game changer. Right? So then you describe to me that this week she had some hours off the ventilator, is that right?
Tara: But how do you, at this point it’s not actual weaning off the ventilator, it’s somehow we need to improve her lung capacity.
Patrik: Yeah, sure, but that’s. .
Tara: Which is mobilisation.
Patrik: Correct. Correct, correct. So this week how much time did she have off the ventilator, roughly?
Tara: 20 hours.
Patrik: Right, right.
Tara: That was only in two days because we lost… Well, we lost one day because she pulled the tracheostomy out, so it had to be changed. Then we lost another day because the tracheostomy was malfunctioning.
Tara: So she came to the hospital on Saturday because the tracheostomy was malfunctioning, and I guess you can’t really say it malfunctioned when she pulled it out. But then they put a new one in, and overnight it malfunctioned. So, I agree with you that it seems like there should be a pretty good case, that this tracheostomy is very touchy, and sending her to a nursing home place facility without the skilled people is a death sentence.
Patrik: Correct. Correct.
Tara: If it were a normal tracheostomy, then I could almost see it. But being this touchy, I mean I don’t think we’ve given it enough time to prove that it’s not going to happen again.
Tara: It’s only been, like, three days since it malfunctioned.
Tara: The second time.
Patrik: Is it still a size six?
Tara: What was that?
Patrik: Is the tracheostomy still a size six?
Tara: Yeah, yes. You know, I did ask the surgeon about that when they replaced it a second time, and he said, you know, they just felt like that size was working for her. You know, I guess they think that that’s the biggest they can go because of her throat issues, and the curvature in her neck, and whatever.
Patrik: Is it still leaking out?
Tara: It doesn’t seem to be an issue.
Tara: I think they may have kind of cured that because I think a lot of the leak issues was when people were fiddling with it too much.
Patrik: Sure. Sure. I agree, and look, if it stopped leaking, then I might stop saying that she needs a bigger size. But as long as it was leaking, I just thought that she needs the bigger size. But if it stopped leaking, then the size might be appropriate.
Patrik: So, okay. Let’s look at this, Tara. So she went from LTAC where they’re supposedly the experts on ventilation weaning, where they didn’t even have her on a ventilation mode where she could possibly wean. But in ICU where within 24 hours she was on a weanable ventilation mode. She now has some time off the ventilator, right? Look, even if it had only been five hours, I would have said, well, hooray, that’s a start. Now she had 20 hours off the ventilator, right? Got to put this in perspective. Now, they know what they’re doing, which is why they took her off the ventilator to begin with, right? They could see some resources within your mom, that she could do that. Now, it’s a matter of, you know, if you find something that works, keep doing more of it, not less. Have you seen her today?
Patrik: Right, when are you going to see her next?
Patrik: Tomorrow, okay.
Tara: She was basically asleep again when I left Friday, yesterday morning.
Tara: Because of the CO2 levels again, so I knew she was going to take a day and a half before she’ll come out of that. So I didn’t even push the issue of trying to go back up today.
The 1:1 consulting session will continue in next week’s episode.
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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!
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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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