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Quick Tip for Families in ICU: My Mother’s Been in ICU for 3 Weeks on BIPAP (Bi-level Positive Airway Pressure), CRRT (Continuous Renal Replacement Therapy), Vasopressors After Cardiac Arrest, Can She Go Home?
Patrik: William, there you are. That is all good. Hang on. Can you hear me, William?
William: Yes, I can. Can you hear me?
Patrik: I can hear you. Thank you so much for coming on.
William: You can hear me?
Patrik: I can hear you. I can hear you.
William: Okay, great.
Patrik: Thank you so much for coming onto the call.
William, is there a cardiologist involved in all of this?
William: She’s a heart patient, so there’s a team of cardiologists working on everything.
Patrik: Okay. Has she had an angiogram? Do you know what I mean by that?
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William: What is that? No.
Patrik: Did she have a screening of her heart after the cardiac arrest?
William: Okay. Well, that I don’t know.
Patrik: Don’t know.
William: That I don’t know. Yeah, I’m just assuming they did. They did all the tests they were supposedly to do. And then, they’ve been taking X-rays, of course, of her at chest and everything every day.
Patrik: Right, okay. So, is the hospital open to take her home? Are they open to the idea?
William: They say they want to only transfer her to ICU and hospice. When I brought this subject up, they were starting to freak out.
Patrik: They were starting to freak out.
William: Yeah.
Patrik: Okay. But William, now that you’re telling me your mother is awake, do they need to stop talking about end of life and do they just need to get on with treatment and hopefully turn this situation around? Because it sounds to me like that’s a possibility too.
William: What they’re saying is since the vasopressors keep rising and she’s getting to a max level, it’s impossible for it to be turned around.
Patrik: Okay. What’s the main issue there? Is it heart failure?
William: They said multiple. Yes, it’s heart failure and COPD (Chronic Obstructive Pulmonary Disease), lung disease. So, she was denied for transplants in all those in all the major hospitals we’ve been attempting to. And then the problem also with that, she was full of pneumonia the first time they asked to get her baselined, so everybody said no.
Patrik: How old is your mom?
William: 67.
Patrik: Not very old. Have you heard of the term ejection fraction?
William: Ejection fraction? No, I have not.
Patrik: Okay. I would be very, very curious what your mom’s ejection fraction is. Basically, ejection fraction is a percentage that the doctors will get from an ultrasound of the heart, how strong a heart is pumping. That would be a very good indicator in terms of where this is going.
If her ejection fraction is poor, chances of survival are lower. If her ejection fraction is, I would say 35 and above, maybe this can be turned around. Does your mom have a history of cardiomyopathy?
William: That’s the irregular heartbeat?
Patrik: No, no. no.
William: That would be arrhythmia. Yeah.
Patrik: That would be like atrial fibrillation or AFib. Have you heard of that?
William: Okay, so the reason she received the pacemaker a few months ago is because she was born with TOF (Tetralogy of Fallot), so she’s had a surgery on her heart to close the hole back when she was 7.
She repeated this process 30 years ago. The cardiologist she was seeing has found leaky valves, so he put the mitral clip in there and has cauterized a couple of areas to try and get it to stop. Every time he’s done these new things, she’s gotten weaker and weaker and weaker, hence they ended up putting in the pacemaker due to a heart arrhythmia a couple of times, and so, that was all cleared up.
But when her heart arrested, when they raised the milrinone about three weeks ago, her heart arrested and the pacemaker wasn’t complete. It didn’t have the second coil on the bottom, so it didn’t fire and it didn’t work.
Again, they called me to perform CPR (cardiopulmonary resuscitation). It took them about 15 minutes for that conversation. But then she was intubated for about 24 hours when they were there to pull it off. Then there, she was back on these same things, the epinephrine, the vasopressors for the next couple days. They took her off a bit, put her back on the milrinone, back to the lower dose, and she was okay.
Now, she got a pneumonia and so they were taking care of that. Then they called it, it was a MDRO (multidrug-resistant organism) in her lungs. They continued with meropenem.
Patrik: Meropenem?
William: Yes, meropenem and vancomycin together. They’ve done her a couple of rounds of the vancomycin. They would check her, of course, to see if her white blood cell count and everything when they take her off.
Then about five days ago, she got real tired, real everything. They pulled all the blood panels, they found another pneumonia, and that’s the same day everything went down so far. They say her body just crashed, and that’s when she had to go back on the CRRT (Continuous Renal Replacement Therapy), putting her all back on the epinephrine, on the norepinephrine and everything else. It was all one day, again, just all one day.
Patrik: Okay. William, do you have access to the medical records?
William: I do, not on me at this moment, yes.
Patrik: Right. I would be very, very curious. I’m almost 99% certain they would’ve done an ultrasound of the heart at some point. With that ultrasound of the heart, they would’ve done what’s called an ejection fraction. I think I would be really curious to know what they determine is her ejection fraction. I believe a lot of your answers what to do next lie there somewhere. Because it really depends on how weak the heart is.
Now with the infection in the lungs, are they saying that’s cured?
William: They don’t see another infection in the lungs, but the cardiologist that came in this morning said there must be some type of infection in her body to start another vancomycin round.
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Patrik: There must be what?
William: There must be some type of infection because they need to start another round of vancomycin.
Patrik: I see… which is probably also contributing to her needing more vasopressors.
William: Yeah.
Patrik: Do you know if she’s got a temperature?
William: No, her temperature always stays low, almost hypothermic. We keep her heated up.
Patrik: Because of the CRRT.
William: Okay.
Patrik: Her temperature would be masked because of the CRRT. The minute they take her off the CRRT, her temperature would go up. The question is, how high would the temperature go?
William: Okay.
Patrik: Do you know her white cell count number?
William: Not of today, no. He just said it has to be high, so it must be an infection. That was the cardiologist. But no, I didn’t get a specific number.
Patrik: Right, okay. So look, William, what I’m trying to find out here is, if your mom was to go home for end of life and that’s her wish, then you probably have to keep getting the wheels in motion for that.
William: Right.
Patrik: But what I’m wondering is, is she potentially better off to stay in hospital for now because there is a chance of a turnaround? Now, I know they’re telling you there’s none.
William: That’s right. They’re telling me no.
Patrik: They’re telling, but your mom is awake.
William: Right, that’s what I keep saying to them.
Patrik: Your mom is awake and your mom is alive. A patient who’s dying, generally speaking, is not awake. There’s always exceptions to the rule. I’m not dismissing that your mom is on high levels of vasopressors. Take that away, your mom would probably die. But I’m wondering, are these all temporary measures to get her to improve? Because if that was the case, then I do believe your mom would be better off to stay in hospital and stay put.
William: Got you. I see what you’re saying.
Patrik: Right?
William: Right.
Patrik: When I first read your email, I read she’s intubated, she’s not talking. I assumed that, but that’s a different scenario. And how often is she on BIPAP (Bi-level Positive Airway Pressure) in a day? How often?
William: She’ll literally ask for it. Her oxygen levels stay at 100, and then it depends on how alert she is, whether they’ll look at the blood gas test. Then, they’ll take it and then usually she’ll last 4 hours on it and then take it off. Last day or so, she could wear it for about 8 hours. But she chose to, they didn’t take her off, and her levels were fine. And they keep saying every morning when she’s wearing it overnight, her levels are fine.
Patrik: Okay. Do you know, William, how much BIPAP she’s getting?
William: If I could see the machine, 20 and 40, and something over something.
Patrik: Probably 20 over 14.
William: Okay.
Patrik: Probably.
William: Okay.
Patrik: Do you know oxygen levels like that she’s getting from the ventilator?
William: I think it was 10 liters at the moment. She was on 4 until this happened, but now they’re up at 10, then they keep everything. They haven’t really changed any of those, they’re just kind of keeping everything at that level.
Patrik: Okay. When she’s off the ventilator, she’s on oxygen?
William: Yes, cannula, yeah.
Patrik: Cannula. Yeah, okay. How is your mom getting nutrition?
William: Since five days ago, feeding tube through her nose.
Patrik: Okay and now?
William: That’s still how they’re doing it, even they’ll put the mask on over it and that’s still it. Because that pneumonia they found was, they said it’s in the lower bottom of her lung, that it has to be from aspiration. It could have been because I kept telling them that she doesn’t need a drink while she’s half asleep, and some of these nurses, “Here you go, here you go.” Because my mom was quiet and just ask for water, ask for ice, ask for anything anytime she wakes up.
Patrik: Okay. Is your mom getting anything for the anxiety that she’s feeling?
William: Yeah. She gets Ativan.
Patrik: Ativan.
William: When she gets put on it, she gets put on the mask a lot.
Patrik: Yeah.
William: She has a bed sore up her back and butt, and so she asked for morphine this afternoon. That’s kind of when I saw you and everything and I said, “Oh my God, let me go check this out.”
Patrik: Right. William, it’s kind of I think you’re stuck between a rock and a hard place here. Your mom might be able to turn this around and I do believe a lot of it depends on the strength/weakness of her heart.
William: Right.
Patrik: If her heart is weak, another medication they could try is a drug called levosimendan. I’ll just type that into the chat pad that you can read it there. Levosimendan, I’ve just typed it in there. That is another drug.
It’s sort of an inotrope kind of similar to dobutamine or milrinone. But it’s unlike dobutamine or milrinone that run consistently or continuously. The levosimendan, you just get one dose over a couple of hours and it’s meant to increase the contractility of the heart.
William: Okay, right. Yeah, I know there’s a tag that says levo.
Patrik: Right.
William: And they did say… Is that the same thing?
Patrik: No.
William: Yeah, I didn’t think so. That’s like the same as the norepinephrine, right?
Patrik: That’s right.
William: Okay, yeah.
Patrik: The levo they are referring to here is Levophed.
William: Okay, okay.
Patrik: Levosimendan is different.
William: Okay.
Patrik: It’s different.
Like I said, if your mom was ventilated in an induced coma, she was unconscious, I’d say, “Look, take her home potentially.” But to me, it sounds like it’s not, she’s not there yet.
William: Right. That’s the way I see it. Yeah.
Patrik: Right? And I do believe that at the moment I can understand her anxiety. I get it. She’s witnessing this first hand, which on the one hand it’s good that she’s awake. On the other hand, it would be terrifying, of course.
William: Yeah, and it is.
Patrik: It would be absolutely terrifying.
William: That was her words, “This hospital’s trying to kill me.” And I mean, it started with the milrinone and now this, she’s definitely afraid of being up there by herself. I’ve been staying with her every day. So I mean, this is insane. The nurses are great. They’re doing what they’re told and they’re great to her, but I just don’t understand half of these, why simple things can’t get done. To me, it’s simple. I don’t know.
Patrik: Yeah. Look, your mom is probably, if you take a scale from 0 to 10 for a patient in intensive care, 0 meaning someone is on their way out of intensive care because they’ve recovered, or taking a scale of 10 where someone is sort of the highest critical level, your mom is probably at a 9 or a 9.5.
But, can she pull through this? Can she reverse whatever needs to be reversed? I couldn’t tell you because I would need to look at the medical records or talk to doctors and nurses directly. Then I could probably, it would be way easier for me to recommend the next steps here. It would be really advantageous to look at the medical records.
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William: Right, right. Yeah. I can actually have some-
Patrik: That would be really advantageous because once I understand and support the need for your mom to go home, it may not be the right thing right now, it may not. Just because they’re telling you they can’t turn it around doesn’t mean that they won’t. The hospitals will always err on the side of caution. They will always be negative by default. The reason they will be negative by default is it’s easier for them to keep staying with that negative end of life and doom and gloom narrative. Right?
William: Right.
Patrik: If they told you, “Oh William, we do this, this, this, and this, and it takes us three weeks and then your mom has recovered,” and it doesn’t happen, they could be liable. By them creating this sort of doom and gloom and end of life narrative, if she’s not improving, they can always say, “Well, we told you so.”
William: Right.
Patrik: You have to read between the lines.
William: Right.
Patrik: Everything that they’re saying is often to manage their liability.
William: Yeah. Right. I get that.
Patrik: Right?
William: Yep. I get that.
Patrik: So, you have to watch what your mom is actually responding to and if she’s responding to treatment. That’s probably the more important question here. It’s not so much what they’re saying. Is your mom responding to treatment?
William: Okay, almost too much. I asked the nurse this morning, I said, “Are you making any test? Are you testing these medicines if it can come down?” He said he went 0.1 down on the levo, the one that’s labelled levo, and her blood pressure dropped with it.
Patrik: Okay. That’s certainly not a good sign. By the same token, there’s plenty of patients in ICU where you need to go up and down with a levo all the time, and yet people may come out of it. It’s fairly unpredictable. What really makes me hopeful here is your mom is alive and she’s not fully ventilator dependent.
William: That’s right. Right.
Patrik: That to me, that’s almost like the most important aspect of this. But I would need to see the other aspects too. In terms of particularly her heart function would be of, I do believe a lot of the answers that you’re seeking for are in her heart function. What does that look like? If we could quantify that with numbers, that would help.
William, I do need to wrap this up in a second. I hope I’ve given you some things to think about. If we could help, if we can help you with reviewing of medical records and advise you from there, I think that would be a really valuable step for you as a next step.
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William: Okay. Where do I reach that on for you, just back on the website?
Patrik: Just keep emailing me, just keep emailing me.
William: Keep emailing. Okay.
Patrik: Yeah. Okay. I’ve got to wrap this up now I’m afraid.
William: Thank you. Thank you.
Patrik: Thank you so much. All the best. Thank you.
All right, now I’ve got to wrap this up now, like I said, we usually go for an hour.
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Thank you so much for watching.
This is Patrik Hutzel from intensivecareathome.com and intensivecarehotline.com and I will talk to you in a few days. Take care for now.
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