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 is in ICU with a tracheostomy in place and Tara is asking if there is a chance that her mom can stay off the ventilator completely?
My Mom’s in ICU with a Tracheostomy in Place. Is There a Chance that My Mom Can Stay Off the Ventilator Completely?
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. 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.
Patrik: Sure, sure. When you’re saying she was sleepy because of the CO2, can you rule out that they’re keeping her sedated? Can you rule that out?
Tara: I guess I can’t at this time, no. The only sedation they were going to give her is Ativan.
Tara: They weren’t planning on keeping her sedated, that was the last thing I knew. They were not planning keeping her sedated.
Tara: But like I said, I can’t verify it from here.
Patrik: Do you know how much Ativan they’re giving her?
Tara: No, I do not. Possibly as needed basis only.
Patrik: Right, right. It would be good if you could get a list of the medications. It would be helpful.
Patrik: I know hospitals too, you know, they might be telling you it’s CO2, and that could be accurate. But often sedation leads to higher CO2 levels because people can’t breathe up. I know hospitals too well that they might sedate patients just to make their life easier. So I think get a list of medications and I’ll tell you why as well. Especially with the view of that, you want to keep her there, for now, you know, let’s look at the medications. If there’s anything in there that would say, oh, hang on a sec. Why is she getting this? Why is she getting that? Because that would keep her sedated. You know, it comes all about building an argument about, hey, she needs to stay in the right environment, and why are you doing this? Why are you doing that?
For example, let’s just say they do sedate her. Let’s just say for argument’s sake they do that. She hasn’t had any more time off the ventilator. I would say to them, well, why don’t you stop that sedation, get her more awake, and start that weaning process again? The devil is in the detail, Tara.
Tara: What was the last question?
Patrik: The devil is in the detail.
Tara: Yes. Yes.
Patrik: Right? That’s what I’m saying. It’s a skill. It’s not like, oh, she can’t wean off the ventilator. Well, let’s look at everything. Let’s look at everything and that includes the medication. That includes what therapies is she getting. She’s in the right environment. The minute you give in, she’ll be gone. You know what’s going to happen next. She’s back on an assist mode, on a controlled mode.
Tara: Right. I agree with everything. I just don’t want to be grabbing at straws. I mean, do you really think there is a chance that my mom can wean?
Patrik: If she had 20 hours off the ventilator this week, Tara. Before these 20 hours this week, when was the last time she had time off the ventilator?
Tara: Thursday. About 12 hours.
Patrik: But before that, when you’re looking back at recent weeks.
Tara: Oh. She hadn’t been weaned in almost a month or whatever.
Patrik: Right, right.
Tara: Yeah. But I mean, but they keep telling me stuff like, you know, her COPD and her lungs, she has stiff lungs, and she’ll never be able to expand her lungs enough to get the volumes up.
Tara: Consistently. I mean, yes, we can get them up short term, but can you get them up consistently long enough to say that she can breathe off the ventilator?
Patrik: Of course, of course.
Tara: Here’s another question that I have though, too. Wouldn’t it be possible, now again, it’s complicated if you’re talking about coming home. But I mean that’s what I was thinking is, long term, say she could get off the ventilator for, completely off. Not even volume support for five, six hours. Maybe that’s the baseline that she has realistically to start with. But I’m saying, so if she came home, I mean, even if she got to the point where she kept the ventilator on at night to give her good air at night, because you’re sleeping. But throughout the idea while you were awake and mobile and you know, with stimulus and things going on, could you be off the ventilator?
Patrik: Totally, Tara.
Tara: But again.
Patrik: No, no. Absolutely. You’re right.
Tara: Yeah, okay. Yeah. That seems like a doable quality of life. It doesn’t seem like you’re grabbing at straws so much.
Patrik: Not at all. If she can be at a point where let’s just say she has daytime off the ventilator, and she has night time ventilation. A lot of patients in the situation like that, have that. Okay. But you also know that if she’s going back to this other facility, it won’t happen there.
Tara: Yeah, so that’s what I’m… I’m so confused and frustrated.
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Tara: How I can get her home to even… Well, we need to get to that point eventually, but then, say she is off the ventilator for 12 hours, now you’re saying how complicated it is just to get a respiratory therapist to even come into our home. So even if we got to the point where she could be off for 12 hours, I still don’t know if I can get her home.
Patrik: Sure, sure. But the first step is she needs to consolidate what she achieved this week, which is she had 20 hours off the ventilator. Let’s start with that.
Patrik: Right, let’s start with that. You need to consolidate what she’s done so far. Once she’s consolidated that, then you can see what your next step are. But keep in mind too that she won’t consolidate in this other facility.
Tara: Yes. That I’m in complete agreement with.
Patrik: Right? So now is the time when she can consolidate. Don’t underestimate what medications can do as well.
Tara: But the other thing is, I don’t even know… I mean, I think more knowledge is available at the hospital, but I don’t think they’re going to ever get her up and mobile more.
Patrik: Sure, sure.
Tara: I mean, that’s where I think I would do a much better job, or at least, I would hire people to help and whatever.
Patrik: Sure, sure.
Tara: Even somebody just standing in front of her, saying, mom, flap her arms was more than anybody else had done in a month with her.
Patrik: Oh, my goodness.
Tara: So at the hospital, they just don’t have, you know, you get an hour time slot. They do what they can do. If getting up on the side of the bed, you feel tired after that, then they say, okay, well, we’ll see you tomorrow.
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Patrik: Sure, sure. Look, I’m with you. As I said, I’m all for home care, but it’s got to be with the right team.
Patrik: It’s going to be important.
Tara: I agree with that.
Patrik: Right. For now, Tara, the next steps, I believe is number one, keep her in there. Right? Keep her in there by tooth and nail. I’m very happy to talk to the case manager. I’m very happy to talk with them.
Tara: Okay, well let’s plan on that for sure.
Patrik: I’m very happy to talk to, just for now, just buy time. Because she’s had more signs of improvement than she has ever before. Right? That’s number one. Number two, yes, I hear what you’re saying in terms of what they’re telling you, in terms of she can’t come off the ventilator. She can’t do this. She can’t do that. Now, Tara, listen. Look at what they do and not what they say. Now what have they done? Number one, they changed the ventilator settings. Number two, she had time off the ventilator. Now that to me is way more important than whatever they say. I don’t care what they say. I look at what’s happening. It’s way more important that you watch people’s actions, compared to what they say.
Now, their job is to be negative. That’s their job. They’re trained to be negative. Look at actions and not at words. She has massive improvement within the next week. I don’t know whether your mom can come off the ventilator, you know, breathe without the ventilator for 24 hours a day or have the tracheostomy out. I don’t know that. What I do know is that her situation in the last week has improved significantly.
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Patrik: What I also know is that hospitals sedate patients because of their own convenience. Get a list of the drug chart. Keep them on their toes.
Patrik: The devil is in the detail, Tara. Yes, as I said, I’m all for home care. But she needs to have a baseline to go home. She hasn’t achieved that yet. You need to find out, can she repeat that ventilator weaning? Once you found that out, or once they found out, you know, then you can plan your next steps.
Tara: Okay. Okay. So, well, tomorrow, when I go, I can get the medication list.
Tara: I don’t know if the case worker’s available on Sunday or not. Do you want me to see if I can set something up for Monday morning?
Patrik: Yep, please. Please. Please. When you are not there, is there anybody else there from your family, or are you the only one?
Tara: No, no. I’m it.
Patrik: You’re it. Okay.
Patrik: Okay. Okay, for now, keep looking at the improvements, and keep looking at what they do and what they say. They’re always going to be negative, Tara, they will be negative on the day your mom has 24 hours off the ventilator. They will tell you, oh, we’re not sure it’s going to, you know, it’s going to last. You know. Their job is to be negative. I tell you why are they negative. Let’s just say they would tell you, oh, Tara, look, your mom will be off the ventilator in four weeks’ time. We just need to do this, this, and this, and then your mom will be off, and you can go home. They will never tell you that in a meeting because you could wear them. You could sue them.
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Patrik: They would never tell you that.
Tara: Right, I mean, and I get that.
Patrik: Right? So that’s why I’m saying, you’ve got to read between the lines. You’ve got to watch their actions, not their words. Forget about the words. Forget about it. I hear it every day. I know how hospitals operate. I worked in ICU for 20 years. It’s always doom and gloom. Always.
Patrik: It’s not going to change. The doom and gloom are not going to change. You’ve got to look at what’s happening and not at what they’re saying. The only thing you need to pay attention to in terms of what they’re saying, in terms of they’re telling you, oh, your mom needs to go, and you say no. She’s not going anywhere. Nobody can force you. Nobody. I tell you why. The day the insurance rings you and the insurance says hey, she needs to go to LTAC because we can’t pay for this any longer. That’s the day when you need to start thinking.
As long as you haven’t had a phone call from the insurance, just ignore them. Just ignore the hospital and say, she will stay there. Nobody can force you or your mom. There is enough evidence that this LTAC is going to be a disaster for her, and we can argue on that level in terms of continuity of care, in terms of what’s happened there. If she bounced back once, there’s a high chance she will bounce back a second time. That will be very stressful for your mom.
Patrik: There’s enough argument to be made to keep her there. Again, you’ve got to change your thinking. Don’t respond to that pressure. Just don’t respond to it. Just tell them, she’ll stay where she is. You make up your own rules for now. Your mindset is critical. If you think they will send her out, they will. If you think they won’t, they won’t.
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Tara: Okay. I’ll try.
Patrik: I know. I know. Look, I know this is a very tough situation, Tara, I understand that. There are many unknowns. I understand that. I’m all for home care, but for now, let’s get a baseline and then plan your next steps.
Patrik: Just remind me again, the other facility where she was before, that is closer to home for you, isn’t it?
Tara: It’s in the same area that she’s in right now, in Rutland Vermont.
Patrik: About the same.
Tara: It’s, yeah, exactly the same.
Patrik: Vermont General Hospital would be good. They have ventilation weaning units. They have that. As I said, we worked with a client there, would have been a year and a half ago, you know, they’re all the same. They all wanted to send him out, but because we could see they were making progress, we were arguing on the same level. We said, look, you know, we don’t want this patient to go somewhere else because they’ve taken so many steps, and eventually they came off the ventilator. Took a little while, but they came off eventually. That’s why I’m saying, it’s a skill.
Patrik: If you can set up something with the case manager or with the pulmonologist, let me know. Send me an email when you want that to happen.
Patrik: Then we can set it up.
Tara: Should I just go by, like, your website with the appointments? Have available?
Patrik: No, no, no. Just send me an email. Just send me an email.
Tara: But I’m saying, how do I find the time?
Patrik: Just, look what time do you think they would be available? Tell me a time when you think they would be available.
Tara: I mean, my guess would be between nine and five here.
Patrik: Sure, sure. Yeah, yeah. Look, get a time. Get a time first, right, it would be better… Afternoon would be better for me. But see what you can arrange with them.
Patrik: Then get back to me.
Patrik: All right?
Tara: Okay, that sounds good. Well, at least we have a step forward.
Patrik: Absolutely. There is a step forward, Tara. There is.
Tara: Okay. All right, Patrik.
Patrik: Okay, don’t give up.
Tara: I won’t. Thank you very much.
Patrik: You’re very welcome. All the best for now.
Tara: Okay. I’ll talk to you tomorrow or Monday I guess.
Tara: I’ll send you an email. Okay.
Patrik: Thank you. Thanks, Tara, all the best.
Tara: Thank you.
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)
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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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