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
How to Stay Positive that a Meaningful Recovery is Possible for my Critically ill Mom in the ICU?
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 Juan, as part of my 1:1 consulting and advocacy service! Juan’s mom is with a
tracheostomy and on ECMO in the ICU. Juan asks how can his critically ill mom survive whilst on ECMO and get her out of ICU.
>How Can My Critically Ill Mom Survive Whilst On ECMO & Get Her Out of ICU?
“You can also check out previous 1:1 consulting and advocacy sessions with me and Juan here.”
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Part 11
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Part 13
Part 14
Part 15
Part 16
Part 17
Part 18
Part 19
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Part 22
Patrik: And what’s the outlook like? Are they still optimistic? What’s your impression there?
Juan: The ECMO doctor who was handling her before was on leave for 5 days. So since Sunday, she’s been off. So she just missed out on everything that happened the last few days, and then came back today and was looking a bit disappointed, just because I think before she left, she thought things were getting better, and then all of this happened. She seemed sad I think. But the others looked quite happy today because today and yesterday
she’s had improvement compared to the previous days.
Patrik: Yeah, absolutely. The other positive side is they’re definitely weaning down the Noradrenaline and the Vasopressin. So there’s definitely signs that things are improving. The trouble-
Juan: Yeah.
Patrik: The trouble in ICU is its often two steps forward, one step back. It’s fairly unpredictable. But there is definitely signs for improvement.
Juan: I think they’ve loved that with mom especially, and that she definitely does that, two steps forward one step back, one step forward, two steps back. So I think everyone’s just on edge.
Patrik: Yes. A lot of patients in ICU, its two steps forward, one step back.
Juan: Yeah.
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Patrik: So the question remains that if she gets through all of this, what will a recovery look like? At the moment it’s all touch and go. At the moment, it’s all about keeping the life. The question is what will a recovery look like for her, because I believe it will be very lengthy. But I know you are prepared for that. And the challenges won’t be fewer challenges, they will just be on a different level.
Juan: Yeah. I think the first thing is probably like, let’s get her off the machine. Let’s get her off ICU. And then if it takes time after, I guess we tackle that as it comes. I think time for us is probably the lesser of concern at the moment. Right now, like you said, its survival, and getting off of this acute phase and just getting her out of ICU. I think is number one on everybody’s mind.
Patrik: Very much so. It’s only survival at the moment. And it looks to me like, and correct me if I’m wrong there, but if your mom was in other countries, they would be rubbing into your face every day that she won’t have any quality of life if she does survive and et cetera. Now I don’t agree with that, but it sounds to me like there is no doom and gloom.
Juan: No.
Patrik: That’s good.
Juan: Yeah, we were fortunate to not have to face that, to be honest, given the situation. But no, that’s not come up.
Patrik: Yeah, that’s really good that they’re not putting that in your way to deal with.
Juan: Like we said, we have privileges that other people don’t, which were very good and I think that does have a large impact on that. And I guess we’re just fortunate honestly, at this point, and on that. Yeah.
Patrik: Okay, that’s really good. Okay. Well it’s one day at a time still.
Juan: Yeah.
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Patrik: They also haven’t given you a timeline in terms of, they’re not saying to you, if she’s not off ECMO by any particular date, that she won’t come off ECMO. That there’s no talk about that, is there?
Juan: No.
Patrik: Okay.
Juan: I think the next few days will be key. And I feel like by the start of the coming week, probably some decisions will be made. I know that the weekend starts being more of a slower rest days in any case, airing that she holds stable of course. But if she does, and if she shows improvement and if the blood gas is improved, they can do little bit of the titrating playing around with their report. And I imagine if that happens, then they’ll carry that on for about 2 to 3 days hopefully, and then watch on the coming Monday.
Patrik: Right. How often do the teams change?
Juan: So the ICU doctor and nurse, they had a nurse in the main ICU, doctor changes every 12 hours, but usually they’re on like two to three days shifts. So you see the same doctor 3 days.
Patrik: Right. That’s what I meant. Like they’re changing every 2 to 3 days, are they?
Juan: Kind of. But then we’ve been here for a while, so it’s like the same 3 or 4 people who keep coming back on rotation, I guess. Occasionally, there’s 1 or 2 who we see less often, who come for a shift but we kind of know because it’s been a while.
Patrik: Right, okay. Because you sometimes can see a change in attitude from team to team.
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Juan: Oh, definitely. I think we know the ones who are optimistic and who are, I don’t know, just more attentive or who understand her better, and then there are the others who are a little bit more… Like I told you the other day, it’s the person’s attitude about life I think. Their perception of life.
Patrik: Yes, absolutely.
Juan: So, yeah there is that difference. But we’ve also seen some of them who were more pessimistic earlier changing over time. And I think that’s just a journey with a patient and the patient’s family, and that’s what everyone feels through the whole thing. So I don’t think that there has been an experience like this for any of us, to be honest.
Patrik: Well, what I have seen since COVID, I’ll tell you what I have seen. That pre-COVID, the ECMO cutoff that I’ve seen is sort of 14 days, maybe 20 days at the very most. That was sort of the cut that I’ve seen. I do believe that ECMO has changed that
radically because more patients needed ECMO during COVID. And also COVID is a novelty still.
Juan: Yeah, very much so.
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Patrik: And I think everybody is pushing the boundaries big time.
Juan: We can definitely see that. And I think I remember early on when we came in first, the conversations were around, okay COVID pneumonia. And then I remember at one point, the head doctor said, “Well, I don’t know if it could be a bio weapon, and who knows what would work with
it.” And you probably never hear otherwise that being said. And to be honest, that’s sort of the attitude that we don’t really know. This is such a dynamic and evolving situation, so we have to treat it in a dynamic and evolving manner.
Patrik: Exactly.
Juan: Yeah.
Patrik: I’m sure in a year’s time, some research papers will be written around time, length of ECMO for COVID.
Juan: Yeah, probably.
Patrik: But most likely. At the moment, nobody knows.
Juan: Nobody knows. It feels like we’re doing research right now.
Patrik: Very much so. Unfortunately, that’s what it is. It is research.
Juan: Yeah.
Patrik: And hopefully, if your mom survives, again nobody knows what that recovery will look like.
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Juan: Yeah. Time will tell, I guess.
Patrik: Time will tell.
Juan: One day at a time. We can’t even think of tomorrow.
Patrik: No. And they’re still not talking about lung transplant? That is still not-
Juan: No. I know it’s at the back of their heads. If it needs to be raised, they will raise it. Because like we told you, when we spoke about when she wasn’t improving on the VA-ECMO, and before the IABP was put in, at that point, they had said IABP is better than a lung
transplant. They did throw it in there. They said, “We’re just putting it here so that we don’t shock you later when it does come out. So, they have obviously thought about it and they did drop it in. So it’s there. It’s tucked away, and I guess they will bring it up if they need to. They’re obviously having conversations that they aren’t telling us about, I’m sure.
Patrik: Yes. That would probably be the very last resort.
Juan: Well one of the doctors did say that lung transplant is probably the most complicated one. I think she said it’s even more complicated than a heart transplant in some cases. And she said kidney and stuff is much easier in comparison.
Patrik: Look, I’ve seen mainly heart and lung transplants. I don’t have any experience with kidney and liver transplants. I agree that both heart and lung are difficult. I would actually say that heart is more difficult. However, lung is just as difficult. You got to get it right and you got to select the right donor. There is a lot of room for error. That’s all I can say. But it’s one day at a time. I can only imagine what that feels like
for you. Because there’s not much progress. There is today. There has been progress today?
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Juan: Yeah.
Patrik: Hopefully she’ll keep improving. It’s a little bit like a race against time.
Juan: Yeah, and like I said, especially in ICU. If it’s outside of ICU, then you feel less pressure I’m sure. But in ICU, you definitely feel like every day is itself.
Patrik: It’s precious.
Juan: Yeah.
Patrik: It’s very precious. And also, again I would be surprised if there was any other patient in this ICU that would be sicker than your mom. I would argue your mom is the sickest patient in this ICU.
Juan: Yeah, probably.
Patrik: Are there other people on ECMO?
Juan: There have been. And unfortunately, very sad that we’ve seen people come and go. And there’s a few ICU’s, one, two, three. I don’t know how many, but there’s the one that we’re in, and then there’s 1 or 2 other rooms. And we’ve sadly seen a couple of people come and go. So, yeah. They say that they use that full ECMO in the pediatric department.
Patrik: Look, I guess certainly ECMO is being used on pediatrics. But it’s more and more common on adults as well. I remember-
Juan: Yeah. In fact the one that she has, it says pediatric department on it.
Patrik: Right, okay. Is she the only ECMO patient in this particular ICU?
Juan: No, but there have been others. I don’t know if there are more in the other. There’re a few ICU. There have been two, I think, in the same ICU ward as her, who came and went. Right now, I think she’s the only one in her ward. I obviously don’t know about the other wards.
Patrik: Right, okay. The reason I’m asking is I don’t think there would be ECMO in the other wards because it’s usually one ward. Because not all doctors and not all nurses would be ECMO trained.
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Juan: So then she probably is the only one.
Patrik: I would argue she would be the only one, because-
Juan: Oh, Kevin says that there are a couple of others actually. She’s in the cath lab ICU. Maybe there are others in the other ones.
Patrik: I doubt it, because the ECMO competent staff, you have to have them concentrated in one area and not scattered around. Because you got to relieve people for breaks, you’ve got to troubleshoot. You can’t troubleshoot without someone that isn’t ECMO competent.
Juan: Right, yeah and it’s very specialized.
Patrik: ICU is very specialized. ECMO is super specialized.
Juan: Yeah. I think we know the whole ECMO team then by now.
Patrik: You would.
Juan: Yeah. And they’re the same people. Actually you’re right. Yeah, probably they have changed, but there is a couple of them and they’re always there. But they’re a very good team though, I will say that. They are really good, and they are already nice actually, especially the ECMO team, more than any other team.
Patrik: Right, that’s good. They have to be very close. And yes, I would argue they would not have had many patients on ECMO for that long. I could be wrong, but-
Juan: They probably do not have a lot of patients for that long. Definitely not.
Patrik: No, not for that long.
Juan: Yeah. Okay. But it’s nice to hear there are so many people who are really encouraging. A lot of them, they say that they are praying for her, and all the people looking after her seem to really care, which is nice.
Patrik: Yeah. That’s good. You need that. As I said, if you were in other countries, even here in Australia, people would be very negative.
Juan: Well, yeah I guess I have absolutely no reference point. This is a once-in-a-lifetime experience, and we can’t even imagine otherwise to be honest. But hearing you say that makes me feel even more grateful for what we have.
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Patrik: They would be pushing you to stop life support. And it’s not fun.
Juan: Wow, yeah.
Patrik: So I guess see what tomorrow brings, and hopefully those blood gases will hold up. That’ll be the guidepost for everything, the blood gases.
Juan: Okay, so that’s where our focus is then.
Patrik: And even once she’s off ECMO, you’d still need the blood gases to monitor her. And only once she’s off the ventilator, only then can you stop monitoring the blood gases.
Juan: Okay, yeah.
Patrik: No talk about dialysis, is there?
Juan: We spoke about it yesterday actually. And they said that to do dialysis, they would need to do a puncture and a whole bunch of things. So, unless…
Hello?
Patrik: I’m here.
Juan: Yeah. I was saying that to do dialysis, they said that they would need to do a puncture and a whole bunch of other things. So she’s on the side..
Patrik: Puncture? What do you mean with a puncture?
Juan: As in they would need a catheter.
Patrik: No, they don’t. They could hook up dialysis to the ECMO machine, like they did when she was on VA- ECMO.
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Juan: They did mention that. Why did they say that we don’t need it?
Kevin: She’s already on the hemofilter.
Juan: Yeah, they said that she’s already on the hemofilter for now.
Patrik: Is she?
Juan: Yes. They re-introduced the hemofilter between yesterday and day before they took out some fluid.
Patrik: Okay. But as of now, she’s not on the filter, is she?
Juan: The hemofilter is still there, yeah.
Patrik: Are they using it?
Juan: Yes.
Patrik: Okay.
Juan: They don’t use it too much.
Patrik: Oh, okay. That’s good.
Juan: Yeah. You remember last week when she had it on, they removed about 6 to 7 liters that she used as she passed three liters. So now it’s much less than that. Yesterday, they removed 500ml, and then today I think a tiny bit maybe, with 10, 20ml an hour or something. So it’s not too much. They have it there. So, yeah I think that they will be seeing if the kidney situation improves now since they most suspected drugs. They want to
see if that changes things, and then take a call on what needs to be done.
Patrik: Sure. Okay, well let’s see.
Juan: Yeah, let’s sleep through the night, and tomorrow maybe we’ll see.
Patrik: Yes, absolutely.
Juan: Okay.
Patrik: Okay, all right. Look, let’s reassess tomorrow, or if you need anything just yell out.
Juan: Yes, we’ll do. Thank you Patrik.
Patrik: Thank you so much. All the best for now. Thank you. Bye.
Juan: Thanks, you too. Bye.
Patrik: Bye.
The 1:1 consulting session will continue in next week’s episode.
