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 Julie as part of my 1:1 consulting and advocacy service! Julie’s mother is critically ill in the ICU, ventilated with sepsis and she is asking if her mom needs to be weaned from the ventilator soon to prevent the risk of complications.
My Mom is Critically Ill in the ICU. Is It True that the Longer She is on Ventilator, The Higher the Risk for Complications?
“You can also check out previous 1:1 consulting and advocacy sessions with me and Julie here.”
Dr. Smith: That is correct. Yeah, her kidneys have been okay throughout. It’s been more her circulation, her respiratory system. Her liver, her neurologic status has also been difficult to assess on the sedation, obviously. But you know, that’s going to be an issue as well.
Patrik: Yeah, But I mean that’s really, compared to the last couple of days… I mean yesterday when the family told me that she’s on high doses of the vasopressors, I just felt, “Hmm.” You know, she’s incredibly sick. And now it’s a completely different picture which is really, very good. But at the same time, we understand she’s very sick. I mean, she needs to come off the ventilator, which could be a long road ahead.
Dr. Smith: That’s correct. That’s correct. So yeah, we’ll continue to do everything we can to allow her body to heal. The infectious disease doctor’s altering the antibiotics. Now that we have new bacteria that we’ve grown on our cultures. And what I’ve been explaining to the family is, we’re kind of along for the ride, just like you guys are. We do everything we can to try to get her better, and I promised that from the start.
Dr. Smith: And so, so far, like I said, we just don’t know what’s up ahead. And that’s why I have to be very guarded here. She may be doing good here, but we don’t know if a couple of days something else might happen.
Dr. Smith: That might put us off-track. And that’s where I was saying before, her weakest organs are going to be the ones that kind of break and so her lungs are not strong. Neurologically, there’s going to be another issue that’s going to be something to talk about when we try to extubate. Her heart, circulation, all these things kind of it’s very complicated, and how organs recover from the stillness. And so we’ll just have to kind of wait and see. The longer she’s sick like this, the more she’s prone to complications. And that has to be understood. We will just keep hoping that she continues to recover. She’s definitely rallying, last couple of days.
Patrik: Yeah, that is good news. And have you started sort of to reduce sedation slowly, or are you still keeping her sedated?
Dr. Smith: Yeah, the plan today, and we just discussed it, we’re going to start to lower the sedation a little bit. She’s not ready yet to come off the ventilator, but at least start to reduce that some, now that she’s getting a little bit better. So we can do a little bit of… yeah, have her at least be a little bit more… alertness can come up a little bit. But certainly, we’re not going to stop the sedation yet, she’s not healthy enough for that yet.
Patrik: Yeah, that’s really good news. And the family was telling me that she was on Precedex, and Propofol and fentanyl. I mean, I’m an intensive care nurse by background, I was just sort of wondering, normally from my experience it’s either Precedex or Propofol and fentanyl. I was just sort of curious why you had all the three drugs in the mix.
Dr. Smith: Yeah, we were having issues with her… where she would, I think we just had her on… and correct me if I’m wrong, but what would happen was that she would just sporadically start… her blood pressure would shoot up, her heart rate would shoot up, she would start turning purple. She would have these episodes where… and we couldn’t really explain why that would happen. And we thought it was likely sedation, or related, and so we’ve kept her heavily sedated and so we added the Precedex. And so, that’s the reason why she’s on… and usually we have one or two agents, but we have her on three agents.
Patrik: Right, right. And when you’re waking her up, you’re sort of taking… you’re reducing all of them gently, is that sort of the plan?
Dr. Smith: Yeah, that’s the plan. Yeah, Precedex is good for delirium, and we’re thinking maybe she was having some breakthroughs. And so I think probably what we would want to do is just bring them all down, and see how she does. Given her history, sedation as we try to wake her up, if she continues to improve, it’s going to be tricky.
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Patrik: Yeah, sure, sure. I understand, I understand. But I mean overall, that’s really… it’s encouraging. Which we understand she has a long road ahead.
Dr. Smith: Correct. Correct.
Julie: So Patrik, I’m sorry to interrupt. Dr. Smith has a patient in the ED, is there anything else you want him to answer? I’ll be here a little longer.
Patrik: No, I think that’s really important. Thank you so much. Thank you so much. Thank you.
Dr. Smith: All right.
Patrik: Thank you, bye-bye.
Patrik: Thank you, Bye, bye.
Julie: Okay, did you have any questions for her nurse today?
Patrik: Not really.
Julie: Dr. Smith okay.
Patrik: Not really Julie. I’m so positively surprised. The other thing that we sort of saw yesterday, and the day before probably, a lot of it was really in your mother’s hands. You know, they are doing everything that they can. And it really comes down to your mother fighting this, which is what she’s doing.
Julie: Yeah, okay.
Daniel (Nurse): As long as he doesn’t have any other complications.
Julie: Any other… did you have any questions for the nurse, Patrik?
Patrik: Oh, okay. No, no, not really. Not really, I think the doctor answered all my questions, thank you. Thank you.
Daniel (Nurse): Oh, good.
Daniel (Nurse): And sorry to cut it short, he just had someone in the emergency room, so I hope you got your questions.
Patrik: No, no, wonderful, wonderful.
Daniel (Nurse): All right, and you can use this room if you want to talk in here, this is a perfect place.
Julie: Thank you so much, I appreciate your time, okay. Okay, so I just wanted her to be able to, if she needed to go do anything that she could do. But so yeah. So mom fought then, and I remember you saying that, about patient fight too. Like about her finding the fight, so she must’ve fought for it.
Patrik: Yes. Yes, absolutely. And as he said, the next biggest obstacle is the ventilator, which is also why I asked, heart, kidneys, you know, because if they for whatever reason, would be in trouble, that would be another obstacle. But it sounds like heart and kidneys are fine, the focus can really be on still fighting the infection as well as then, weaning her off the ventilator.
Julie: And could the circulation issues that he’s talking about, could that still be a little bit of that shunting going on? Because we are just a little bit over the hump of the infection?
Patrik: Absolutely. I mean, I don’t think that would be too much something at the moment, given that she’s off the vasopressors. Having said that, can you send me a picture of the ventilator?
Julie: Yes. But her extremities are still very ice cold.
Patrik: Are they?
Patrik: Does she normally have cold extremities? Is she getting cold easily?
Julie: Yes. Yes. She always wants her socks, and she always wants her blankets on. And she’s wanted that since I was a kid. She’s just normally cold person.
Julie: And they do have her with no socks, no blankets, nothing on in there. So it could just be her body temperature.
Patrik: Yes, yes. What’s her temperature at the moment? Do you know?
Julie: We don’t, but we can go back in that room. Now we’re just in a meeting room, but we can head back in.
Patrik: You can tell me later, just text or email. Okay, but I mean, this is really encouraging. And it is like, the most important thing to me was really, since you contacted me is, are they doing everything they can? Which is what they have, and put your mom in a position where she can fight this.
Patrik: That was the most important thing to me. And yes, she still has a long road ahead and if she ends up with a tracheostomy, it could potentially be days or weeks, until she comes off the ventilator. But she has shown a lot of resistance.
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Julie: To coming off of the tracheostomy ventilator?
Patrik: No, no, no, no. With resistance, I mean, look, she was on high doses of vasopressors over the last 48 hours. That is really life threatening. Right, the doses were going up. And yesterday they was slowly going down, but she was still on a lot of the vasopressors. Right? And now that they are all weaning down.
Patrik: That is such a good sign. At the moment she’s on one mcg?
Julie: Of the vasopressors? like since she got on the ventilator too.
Julie: This all could be a result of her bowels, because you know, she had not had a bowel movement and we’re going on 17 days. I mean, they even said she hadn’t had a bowel movement in the nursing home. And maybe a lot of her issues was becoming… you know her bowel was not being emptied and becoming toxic because of because of that.
Patrik: Well look, no doubt about that. And that’s caused the sepsis. But now it looks like she’s turning the corner, at least on a septic point of view.
Julie: Which is huge. You know I’ll take every little bit. And she has eye opening right now and she’s turning to me and looking at me and I feel… They keep responding back to her neurological… now is that, that’s not because something here has caused damage to her neurologically, that’s because they’re talking about her long term past with neurological issues, correct?
Patrik: Very much so. There is no indication as far as I can see, that there are neurological issues. What you have to understand is, I think I explained that to you yesterday, when someone is in an induced coma and they’re waking up right, slowly, nine patients out of 10 are confused. Okay?
Patrik: And I can see the same happening for your mom. And waking up often in induced coma can be challenging. It often doesn’t happen like, you switch off the Propofol and the fentanyl and the Precedex and patients wake up. It’s often not like that. It can take days sometimes. And it’s more like switching on a light with a multiple switch rather than switching on a light with one switch. It’s sort of a gradual process.
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Julie: Okay. But we’re not saying that… I guess lack of better terminology, like brain deadness.
Patrik: No, no, no, no!
Julie: What is happening?
Patrik: No, no.
Patrik: No. I tell you what you need to look for, simple things like, when you talk to your mom, grab her hands for example, and ask her to squeeze your hands. That’ll give you an indication whether she can follow that or not.
Julie: Okay. This is the most likely today that she will be able to follow that, because she has been so sedated that, her one time that she wakes up and has of any sort of being awake, even if it’s just a crack in her eyes is once a day. And I feel like they sedate her because they feel like she gets uncomfortable. And so today is the most awake I have seen her since last Saturday.
Patrik: Right, right. And it is important that they continue to bring her off the sedation because, as far as I can tell now, there is no reason to keep her ventilated. Or not to wake her up, you know, I mean when I said there is no reason to keep her ventilated, she’s still… the last picture that you sent with the ventilator, she was on a lot of support. But they need to start working on that.
Julie: Okay. And so I’ll send you pictures via text message after that, is that okay with you? Of all the machines in there?
Patrik: Say that again please.
Julie: I’m going to send you, after we get off the phone, I’m going to send you pictures of all of the machines.
Patrik: Yes please. Please.
Julie: Did you say yeah?
Patrik: Yes, yes. Absolutely, absolutely.
Julie: Okay. And then the sedation should continue to come down, seeing that she’s turning this corner. And our biggest focus right now, I mean obviously kind of getting a little more in a clear with the emptying of the bowels and the maybe a day or so, to kind of just give herself a day of rest. And then the order would be kind of wean down these sedations, and start talking about getting her strong enough for the intubation so that we can get her off the pipe or I mean get her off the intubation to get her onto the tracheostomy.
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Patrik: Very much so. Very much so. He was referring to your mom’s pre-medical history. Is there any other significant pre-medical industry that I’m not aware about, that could potentially-
Julie: From what we were told, and how we arrived here at this hospital is, my mom had schizophrenia and bipolar, all of her life. And then two years ago it was confirmed after arriving here on the 16th, that there was something in her chart that had been following her, was a diagnosis called Progressive Multifocal Leukoencephalopathy (PNL).
Patrik: Yes, yes.
Julie: And that’s all we know. So they say that that’s why she can’t walk, but keep in mind that they are still focused on the factor of schizophrenia, that every time we tried to take her in, when she was still crying and trying to walk, I mean, this is an issue where you take her in and you’re like, “Hey, my mom’s falling, her lower back hurts. Every time she takes a step, she’s crying out in pain.” And they’re like, “That’s the least of our concerns right now, we think it’s behavioural.” Well, then two years ago they find out this whole time she had that disc. And so once again, they were like, “No, we’re worried about the mind. We’re not going to think about the disc.” The slip disc in her back.
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Julie: And so I feel what happened was, is due to the tremendous amount of pain she was in her back, she stopped moving. And I do believe that, the reason why is because of that. Not addressing the slip disc, and keeping, continuing to focus on the bipolar and schizophrenia and the fact that we can’t get it under wraps. She just never did well with the psych meds. And so they just don’t understand that. They don’t know why she’s not doing well with the psych meds. Then they started to discuss on white brain matter and then they’re like, “She has Multiple Sclerosis (MS).” And they said, “No, she doesn’t have MS.” And then I think they just eventually were like, “Well, because she can’t walk and her psych is so bad.” Her psych’s not bad, these people are people that meet her for moments. Yeah, she hears voices, but she also has the ability to enjoy life. Like talk to us. She knows her grandkids. She can go outside. She loves her coffee and beautiful things. So like makeup and facials.
Patrik: Okay, okay, okay.
Julie: You know?
Patrik: Yeah, absolutely, absolutely. That’s fine. I was wondering whether there was anything else more related to maybe lungs or heart or… but again, it sounds to me like the main issue going forward, if the bowels keep working is really the lungs. And getting her off the ventilator. But it’s much easier to focus just on that rather than worrying about many other issues, including heart, kidneys and whatever. And it’s also like as he said, in her position and you know, she could have set back. And it’s often like, like I mentioned yesterday, it’s not going to help looking too far ahead. It’s like one day at a time. And it’s also like, could that be another setback? We hope not. But again, your mom is still very vulnerable at the moment.
Patrik: So it’s watching for those signs of continuous improvement, and it’s often baby steps. Now that she’s sort of turned the corner reasonably quickly, I do believe that the other signs of improvement will be much slower.
Patrik: It’s unlikely that she will come off the ventilator within 24 to 48 hours. Can’t draw that out of course, it would be great if she could. But as he said, the longer she is on a ventilator, the higher the risk for complications, the higher the risk for weakness and so forth. So that’s something we need to consider.
Julie: How to be aggressive about the ventilator? Because you know my feelings on this, was the intubation came because she was so highly sedated on the Precedex, that was she was not on aspirating her own CO2, and went into induced coma.
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
- How to eliminate fear, frustration, stress, struggle and vulnerability even if your loved one is dying
- 5 mind blowing tips & strategies helping you to get on the right path to making informed decisions, get PEACE OF MIND, control, power and influence in your situation
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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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