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
Will It Be Safe for my Mother-In-Law to Transfer from ICU to LTAC?
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 Eric, as part of my 1:1 consulting and advocacy. Eric’s mother-in-law is in ICU, and he is asking why is it important for her to be mobilized to wean her off the ventilator.
Why Is It Important for My Mom-in-Law to Be Mobilized to Wean Her Off the Ventilator?
“You can also check out previous 1:1 consulting and advocacy sessions with me and Eric here.”
Patrik: What’s the length of time they stayed there? But more importantly, it’s really important that they… We all follow routines every day. All of us. And it’s very important that they get her in a routine every day with physical therapy, mobilization, weaning off the ventilator, stimulation. It’s not rocket science, but it takes work.
Eric: Okay. Yeah.
Patrik: It takes work.
Eric: It takes time and work, yes.
Patrik: Takes time and work. Your mother-in-law is very helpless at the moment, I would think she probably can’t do anything for herself.
Eric: No, obviously we’re getting her to wake up.
Patrik: Right, right.
Eric: Yeah.
Patrik: So, it really takes a lot of work, effort. It gets a team that’s willing to get to know her.
Eric: Okay.
Patrik: Takes a team that’s willing… In hospitals or in ICU, at the end of the day, people come and go and a patient, unfortunately, is often just a number. And you don’t want her to be another number in this place.
Eric: Right. And we are probably going to be there a lot.
Patrik: Of course.
Eric: … we’re going to be advocating a lot. So that’s a good side of this situation, which is, she’s not just going to be there and there’s no one to be there. So, knowing these things are really helpful for us, like knowing that we should ask for a routine, knowing that we should ask for treatment, to be aware of what they’re giving her at all times, to put pressure on doctors and to see what they do with other patients and stuff like that. So, it’s really helpful to have you on the phone, so thank you for doing the work that you do.
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Patrik: It’s a pleasure. The other thing you should be looking for, as soon as she arrives there, they should be documenting what they’re going to do with her. It shouldn’t just be… It’s probably reasonable to say there will be doctors and nurses coming and going. And if someone was off for a week or a few days, where do they start if they’re looking after your mom? Well, they should be looking at the care plan and knowing, yep, at nine o’clock in the morning, we’re getting her out of bed. From 10:00 to 11:00, we have her off the ventilator, then we’ll get her to have a bit of a break, and then we’ll start again at two o’clock. Something along those lines is critically important to bring people into a routine. So, if you’re doing the same thing every day, it’s also easier to measure progress.
Eric: True.
Patrik: Right? But that takes work, it takes experience. It’s bloody hard work to wean someone off the ventilator, to mobilize them after such an insult to the brain, such an insult to the body.
Eric: Right.
Patrik: And those facilities often don’t have the manpower or the experience to facilitate all of that. Now, I will say this, this is one of the few facilities, just judging online, that has good reviews.
Eric: Yeah. So, you think moving forward, our number one focus as her family members would be to make sure we’re pushing for routine and make sure we’re pushing for mobilization, correct?
Patrik: Yeah, very much so. And picture this. A healthy person, if someone confined a healthy person to bed for three weeks, seriously, you would potentially lose the will to live and you would deteriorate. Can you see where I’m going with this? Mobilization is absolutely critical a long period of time.
Patrik: Absolutely. How old is your mother-in-law?
Eric: She’s 65.
Patrik: Right. And prior to this, fit and healthy?
Eric: No, she’s honestly really healthy, the only thing happened is the fact that she had COVID last year. The good news too though is she has a lot, for a while, been breathing on her own through the ventilator, so she’s been able to sustain her own breath really good. I mean, due to the surgeries that she’s gotten, the trach and the PEG (percutaneous endoscopic gastrostomy), they put her back just for support, but I’m very hopeful she’s going to be able to get weaned off of that. But I’m going to ask my fiancée if she has any question for you.
Patrik: Please.
Eric: No, nothing?
Patrik: Please.
Eric: Nothing at all?
Cristy: I think first of all, I want to thank you for all your help. I’m not quite mentally all there, so I’m just kind of letting Eric do the lead here, but I am listening and appreciating everything that you’re saying.
Patrik: Right. It’s a pleasure. It’ll be hard work-
Eric: Thank you… I’m sorry, go ahead.
Patrik: It’ll be hard work, and patience and persistence will be your best friends.
Eric: You said patience will be our best friend?
Patrik: Patience and persistence will be your best friends. And not giving up, because-
Eric: Right.
Patrik: … you may not see quick results, but people overestimate what they can achieve in a week. But they underestimate what they can achieve in two months.
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Cristy: Yeah, I agree with that, and the more I learn about this, and unfortunately, I’ve had to have a crash course in cardiac arrest and neurological recovery and everything like that over the past couple weeks. The more I learn is that nobody can really say what’s going to happen.
Patrik: No, no.
Cristy: Nobody can really say what’s going to happen and if you give things time, it seems like some pretty incredible things can happen. They don’t always happen, but they can happen.
Patrik: They can happen, and also there is always the notion around, and I’m sure you would’ve heard it as part of the discussions in ICU, I’m sure the team there would’ve had discussions around you about quality of life for your mom going forward, or was that something that has been discussed?
Cristy: Yeah, I mean… They have. We’ve kind of-
Eric: Pushed back.
Cristy: We kind of pushed it off from the beginning-
Patrik: Good.
Cristy: … and we were very lucky that she was matched with the neuro attending that she got matched with, because she is just a dogged person, and she doesn’t want to give up and she cares about her, and she cares about her doctor. And once we told them from the beginning where we said, “You know what? We’re not giving up; we’re going to do everything we possibly can.” My thought process is, if the shoe was on the other foot, that’s what she would do for me so I’m going to do what she would do for me.
Patrik: Right.
Cristy: And her attending, they said, “Look, we don’t know, we think there’s, in the best case, there’ll be some disability, we don’t know how much.”
Patrik: Yeah.
Cristy: So, and like we’re talking about, I think it seems to me the more that we learn through science, the less we know, the less we can say what’s going to happen.
Patrik: Very much so. And I’m sure you have already taken into consideration what would she want if she could make her own decision.
Cristy: Yeah, yes. And I know… I think that as time goes on, that’s more to keep in mind. My though process is, at this point in time, she would want us to fight. If it was me in that bed and her on the outside, in three weeks there’s no way she would give up on me. So I think there is that way too, but as time goes on, I don’t know. We don’t know. But my thought process is it’s too early to say. Too early to get into that, we’re trying to stay very focused and very… And it’s very, very hard. It’s very hard to stay focused and to stay motivated and to stay positive, but that’s what we’re doing our best to do.
Patrik: Yeah.
Cristy: And to give her a real shot and let them exhaust every resource they have and every therapy and every intervention, all those sorts of things and see what can come of it. Because I think it’s… I would never want to do something and then regret what I didn’t. And it’s not my choice first of all anyway. But I would never want to say, “That would be my vote to do something,” and then later on wish, oh I wish I would’ve given it more time because look at what happens when people go through physical therapy for a long time. It’s very hard.
Patrik: Absolutely. The biggest mistake I believe people can do is give up too early. There’s plenty of time to give up. If you don’t try, you definitely won’t succeed if you don’t try.
Cristy: Absolutely. I agree with that a hundred percent. So that’s our mentality. In the grand scheme of things, these three weeks… Has it felt like forever the last three weeks? Yes. But it’s only been three weeks. And she’s been showing some signs of progress, which is another thing.
Patrik: Yeah.
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Cristy: It hasn’t been a lot, it hasn’t been always consistent, but she has shown some signs that my understanding is some people don’t. And at this point… And again, it just seems to me like the more I read studies and read research, sometimes people have all good signs, and it turns out not so good. Sometimes people have all bad signs and it turns out all right. So, who can say?
Patrik: No one knows and long-term recovery, it’s not really based on science, I believe. Because it’s so different for different people.
Cristy: Right.
Patrik: Very different for different people. Now Eric, you mentioned this week when we first spoke that she is following simple instructions, is that correct?
Eric: It’s very inconsistent. Some days, she’s moving her arms. One day, I kept telling her to push my hand several times and she would do it, but then she hasn’t done that consistently again. Another day, she opened her eyes really good, and we kept telling her to look at us and she was doing that very consistently. But it’s varying consistence, every day’s really different. That’s one question I have is, why is she opening her eyes for longer some days and she’s able to focus on us when we ask her to, and then the next day she can’t open her eyes, but she’ll move her arms a little bit more? So, we definitely have seen a lot of things, she has all her reflexes, she has pain reflex, gag reflex, her pupils are good. And then she sometimes moves her limbs and then sometimes listens to us.
Cristy: She also has some spontaneous movement. She has some spontaneous eye opening. Of course, she never does it when the doctor’s around.
Eric: But we see it.
Cristy: But we see it because we’re there all day every day. So there are times where she opens her eyes up for no one’s touching her and keeps them open for a while. There are moments where she moves everything, moves her arms, her legs around. I can’t say, I’m not a doctor, but I look at it and…
Eric: It kind of feels like it’s two steps forward, one step backward. It kind of feels like one day she does really good and we’ve seen progress and then she takes a couple of days where she’s not really active or responsive, but we see a lot of things, we’re there all day.
Patrik: Well, just on that note when you say, “Two steps forward, one step back,” I think that’ll probably continue.
Eric: Okay.
Patrik: Just be prepared for that, and also be prepared for maybe some major setbacks. And I don’t want to jinx it or don’t want to be negative, I’m just talking from experience. As long as someone is on a ventilator, they are fairly prone to getting pneumonia or a chest infection, so just be prepared that that might be part of what’s about to come.
Eric: Okay, so that’s important, so we’re going to try to work with that.
Patrik: I’ll tell you something. If you and I would talk again in two days, in three weeks, it doesn’t matter. My first question to you is, did they mobilize her? That is my very first question to you.
Eric: The most important, okay.
Patrik: Picture this. Someone is on a ventilator, they’re deconditioned, right? It’s similar to if you want to run a marathon or 10 miles or whatever, you can’t do that without training for it, and it’s the same with the ventilator. You can’t get off the ventilator without mobilization, strengthening your breathing muscles, just not happening without that.
Cristy: Right.
Eric: Got it. Okay, that’s really good to know. I know your time’s limited and I know you’re really busy, so let me ask you my last question for today. With time, with progress, can we bring her home?
Patrik: Yep.
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Eric: Is that something that potentially we can fight for even if we don’t know what’s going to happen?
Patrik: Yep. So the answer to that question is a yes, but… So I’ll give you a little bit of context. We are running an organization here in Melbourne, Australia, Intensive Care at Home. We are basically bringing patients home from ICU that have a hard time getting off the ventilator. So it can be done, there’s no question about that. But similar to ICU, it’s a highly specialized skill.
Eric: Okay.
Patrik: Right?
Eric: And it’s a different story if she does get off the ventilator, right?
Patrik: Oh, look, absolutely. As soon as she’s off the ventilator, absolutely. It’s so much easier.
Eric: Okay. Beautiful. I think this gave us a lot of peace of mind and we appreciate you so much. We’re going to give this a little bit of time while she settles in and then we’ll schedule the next 30 minutes.
Patrik: Please.
Eric: And who knows, probably a whole bunch of other sessions moving forward too.
Patrik: Yeah, that’s great.
Eric: Thank you so much.
Cristy: Thank you so much.
Patrik: It’s a pleasure. Thank you, bye.
Eric: Bye.
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)
Thank you for tuning into this week’s YOUR QUESTIONS ANSWERED episode and I’ll see you again in another update next week!
Make sure you also check out our “blog” section for more tips and strategies or send me an email to [email protected] with your questions!
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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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