What Are the Right Questions to Ask So Our Critically Ill Mom Can Get the Best Care & Treatment in the ICU?

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“ in last week’s episode I answered another question from our readers and the question was

My Mom Is Critically Ill in the ICU & How Do I Know If the ICU Team Gives My Mom Enough Sedation For Her Recovery?

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, balloon pump, and is now on VV- ECMO. Juan wants to know the right questions to ask so his mom can get the best care & treatment in the ICU.

What Are the Right Questions to Ask So Our Critically Ill Mom Can Get the Best Care & Treatment in the ICU?

“You can also check out previous 1:1 consulting and advocacy sessions with me and Juan here.”

Juan: She was quite responsive to me last night actually. I gave her a little talk. She woke up and she was looking at me, and I feel like she was responding. She was moving her mouth quite a bit.

Patrik: That’s good. That would have been before they started her back on Atracurium?

Juan: No, it was after she’s been on Atracurium for a while though. Yeah.

Patrik: That should completely paralyze her.

Juan: Nothing has really completely paralyzed her. She seems quite interactive throughout, which has confused the doctors as well.

Kevin: I think the resistance to these medications has built up. So I think it’s not having as big of an impact on her as it used to.

Juan: She moves her head, she does like…

Kevin: Everyone is surprised on how she reacts. Even though she’s on paralytic, and quite a lot, she’s able to move.

Patrik: Right. It’s a bit of a worry that she’s on the Atracurium, and she’s still responding. I’ll tell you what on the one hand, what worries me on the other hand. So when someone is on Cisatracurium or the Atracurium, they should be heavily sedated, and she’s not. And I’ll tell you why she should be heavily sedated. Imagine you’re paralyzed and you can’t move, but your brain is working potentially. It’s a terrible feeling.

Juan: Yeah. I think that is what was causing her a lot of the anxiety. But that’s why they’ve kept up with the paralytics as well because they don’t want her to feel that. But they don’t really know what to do because obviously she’s not completely there, and it’s not that she’s fully interacting the whole day. But she definitely does respond to them and to us, in a sense like you know she’s listening. And she is and she’s listening.

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Patrik: Right. How many days has it been now, or how many weeks?

Juan: Since she was admitted, it’s probably getting close to around 43 days now. And I don’t know about the paralytics and stuff. She’s been on-off, but on most of the times.

Kevin: Yeah, but five days off for the paralytics.

Patrik: Okay.

Juan: And so obviously she’s been on all different doses. It’s gone up and down, and last week it’s mostly been Morphine. The Fentanyl has been off. Maybe introduced some Midazolam I think yesterday at two. Is it right? 2? I think I sent you the images of where she was at.

Kevin: It’s 2, yeah.

Patrik: Okay. All right. Well, all I can say is let’s take one day at a time. With the ozone therapy, so they were quite responsive to you to introduce that?

Juan: No.

Patrik: No? You had to push them?

Juan: Yeah, we’ve been pushing for it for a while. But then I think given what happened over the last two days, I think then it was sort of like there’s not many other options left anyways. And yeah they contacted someone who is one of the leading ozone therapist in the country. And she gave them quite a bit of confidence, and so we began this treatment. It is supplementary, it’s safe and it’s being done alongside them. And I think now that they’ve seen how it’s happening, they’re a little more comfortable. And I think maybe by tomorrow we shall hopefully see some good results. It should help even with generally the viral and the bacterial and any kind of infection and inflammation. So, yeah. It wasn’t easy, but-

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Kevin: I think that we could send some of the studies we did last time.

Juan: Yeah. Had I not sent them to you, Patrik?

Patrik: Yeah, you have. I have quickly looked through them. Yeah, it looks promising to me. I guess it’s a bit of the beaten path of traditional medicine, but that doesn’t mean it’s not helpful.

Juan: Yeah. The thing is that we’ve done a lot of things now with her. We’ve thrown everything at her. We are doing some strange combinations and things here. We have a lot of alternative medicine here. It’s in our culture. So it’s not completely out of the blue that we try these things. Generally they use medicinal herbs, they’re in our data and things like that as well. So it’s not as foreign to explore other options as it might be in other countries.

Patrik: Yeah, that’s good. Okay. Yeah, must be a big role, like whole stuff for you.

Juan: Yeah. I think that’s just adrenaline. There’s so much adrenaline in all of us right now. She’s given us good hope as well. She’s done some really fantastic turn arounds. And yeah, everyone’s really rooting for her. I know that all the doctors and nurses really want to see her improve. And everyone’s really working with the same goal in mind. And she’s a strong woman. So we’re just going to keep at it and keep her spirits high.

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Patrik: Absolutely. That’s all you can do. And it also sounds to me like most other ICUs that I come in contact with, whether as a bedside nurse or with what I’m doing now, they’re very negative, generally speaking. I haven’t heard that from you, that they’re negative.

Juan: I guess it’s also a combination of the fact that it is Kevin’s hospital, so that does add another layer to it. But genuinely I think the doctors have been over each week. They’ve become increasingly more positive. I think as they got to know her as a patient, as they got to know us, as they’ve seen her and how she responds, they’ve even told us she’s given them courage sometimes when they didn’t have it. So it’s been really nice. I wouldn’t point anything bad about them to be honest. I’m really grateful for the way they’ve been and how they’ve encouraged us.

Patrik: That’s good. Yeah, that is very positive.

Juan: Yeah. The nurses have been really amazing as well. I think they play an equal, if not more important, part than the doctors in many ways. And I think she responds really well to them.

Patrik: That’s good to know. It’s that most ICUs are so negative. Because I haven’t heard that from you, that’s a good sign.

Juan: Yeah. We’ve been playing music for her, we’ve been doing a lot like just massaging her feet, putting oil on her wounds and things like that. So there’s a lot of care going on. They’ve shaved her twice and they’ve tried to keep her clean. They clean her mouth all the time.

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Patrik: Good. When you say put oil on her wounds, does she have any wounds?

Juan: No. Just yesterday, they noticed those, as I said, bedsores that could be appearing. So they’re just trying to take care of them right now before they get any worse.

Patrik: So she does have bedsores already?

Juan: So they said no, but the ozone therapist who came in to administer the ozone said she suspects they might be soon emerging. So she just preemptively wanted to just look at them before any of that happens.

Patrik: If they’re worried already, do you know how often they turn her?

Juan: They haven’t been able to turn her much to be honest.

Patrik: Yeah. You see that? That is exactly..

Patrik: Go on.

Kevin: Because of VA ECMO and the ECMO cannula stream, it’s been tough for them to turn her.

Patrik: Yeah, I know. And that’s exactly what-

Juan: We have lifted her a couple of times when they needed to chain her off the diarrhea episodes. And then since yesterday, since they’ve been administering the ozone, they’ve been lifting her. So there’s that.

Patrik: Okay. No, I’m glad we’re talking. So it is difficult to turn a patient on ECMO. It’s difficult. It’s not impossible, it’s difficult and it takes a lot of manpower. But it’s imperative that you’re doing it every two to three hours. I can tell you that if she ends up with a pressure sore, the risk of her getting an infection will be even higher. So furthermore, if they can’t turn her, they should be having like a hoist, and they should be lifting her with a hoist, and therefore take the pressure off her back.

Patrik: Now I can tell you, a pressure sore in ICU can be deadly. And I totally get it, which is why I mentioned earlier, can they turn her and can she tolerate that. Because if she can’t tolerate it, she is at a massive risk of developing a pressure sore. If she develops a pressure sore, she might end up with a sepsis very quickly, and she might die. Now there’re heaps of patients on ECMO that you can’t turn, because they are so unstable. And I when I look at your mom’s blood gas, I would be very worried that she might not be able to tolerate the turning every 3-4 hours, which is then why they would need to lift her with a hoist, and change linen, take the pressure off her back for a little while, and give her back a wash that way. I am worried when I hear that.

Juan: This morning as well and last night, they did clean her back and they did all of that when the ozone therapist came in. So both last night and this morning, that happened. But we can raise this again.

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Patrik: I tell you that if the pressure is not really off her back every 3-4 hours, I would even say every 2-3 hours, she’s at massive risk of developing a pressure sore.

Juan: Okay.

Patrik: I would put that on your list of questions to ask. And don’t get me wrong, there are situations where I have some ECMO patients I’ve worked with, you lift them in the hoist, in a sling, and even that they can’t tolerate. It is very tricky.

Juan: I understand.

Patrik: Just be mindful of the risk and if I was you just find out from them what their plan is, what’s their strategy. If they can only turn her twice a day, that’s better than nothing. But I argue it won’t be enough to avoid pressure sores.

Juan: Okay. Yeah, that’s a good thing to bring up. So we’ll do that at the earliest.

Patrik: Yeah.

Juan: Okay, anything else?

Patrik: Not that I can think of. It looks like her hemoglobin is holding for now. It looks like her white cell count is holding for now, which is also a good sign that maybe the infection is at bay, which hopefully will get her blood gas to improve. Is she still on-

Juan: And that hemoglobin could also be just that it’s concentrated, so it’s a little bit higher.

Patrik: Yes, definitely. We’ve talked about hemoglobin… Yes. White cell count seem to be under control. Again, hopefully that is a sign that the infection is under control or getting better, which hopefully then will improve her blood gas.

Juan: Yeah.

Patrik: Right. I’m just trying to think… Yes. Is she still on steroids?

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Juan: Yes.

Patrik: She is. The reason I’m asking is if she’s still on steroids, she might be immunocompromised. And I’m wondering whether the white cell count then is accurate.

Juan: Kevin, she’s on methylprednisolone again, right?

Kevin: Yeah. Well, we can find out the protocol and we’ll message it to you back. I’m not sure of the exact dose, but they did restart the steroids I think a day or two ago when they suspected the PCP.

Patrik: Yes, no surprises there.

Kevin: But it turned out to be the PCP test negative.

Juan: So then they couldn’t remove it actually.

Kevin: So maybe we can speak to them about the status..

Juan: Is there any other reason that they would still have it on, Patrik, the methylprednisolone if the PCP has come negative twice?

Patrik: A lot of patients in lung failure are on steroids. I’m not surprised that she’s on steroids. A lot of patients on ECMO, VV ECMO, VA ECMO are on steroids at least temporarily. If she’s on methylprednisolone, what often happens with methylprednisolone, you start them on a high dose and then you wean it off gradually.

Juan: Yeah, I think It had weaned off completely.

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Patrik: Oh yeah. It would have been. So yeah just ask them if the plan is to wean it off, because you don’t want to be on steroids for longer than necessary.

Juan: Yeah.

Patrik: So yeah look, there’s a few challenges she has to work through. But keep asking the right questions. And it sounds to me like they’re trying all the right things, which is very important. You’ve got the ozone, and go from there.

Juan: Yeah. We’ve added a few of our home remedies from here, so that’s started as well. Yeah, I think we’ll see tomorrow. I do have the feeling maybe, I don’t know. I’m her son, so I will have such feelings, but I feel like in another day, we might see a little bit of an improvement. So I’m keeping my hopes on that.

Patrik: No, absolutely. No, you should definitely be positive. There’s no need to be pessimistic. There’s no point in that.

Juan: That’s the doctor’s job, right, and the family doctor?

Patrik: Absolutely, that is definitely the doctor’s job. Your job is to stay optimistic.

Juan: Yeah. I gave mom a big pep talk last night. She was looking a little bit down after the day. I think those work for her, because I do think she can listen. I do think the sound with the messages get through. So, yeah.

Patrik: All right. We can talk later tonight, if you want to, after you’ve visited her again and maybe get a little bit more information.

Juan: Yeah. We’ll try and have this conversation about the points that we just discussed, and then hopefully we’ll have some updates as well that we can share with you and talk about.

Patrik: Yeah, we can talk later again.

Juan: Okay. All right.

Patrik: Okay. Thank you so much.

Juan: Thank you Patrik. We’ll make the payments today as well.

Patrik: That’s okay, all good.

Juan: Okay, all right.

Patrik: Thank you so much.

Juan: Thank you.

Patrik: Thank you. Bye.

Juan: Have a nice Sunday. Bye.

Patrik: Thank you. Bye.

The 1:1 consulting session will continue in next week’s episode.

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