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 Ron, as part of my 1:1 consulting and advocacy service! Ron’s son is critically ill in ICU and is ventilated. Ron is asking if it is true that 90% of ICU patients do survive but the ICU Team won’t tell?
My Son is Critically Ill in ICU and is Ventilated. Is it True that 90% of the ICU Patients Do Survive But the ICU Team Won’t Tell. Why?
“You can also check out previous 1:1 consulting and advocacy(7) sessions with me and Ron here.”
Ron: Yeah, I can see little breaths in between.
Patrik: Yeah, that’s good. That’s good. Because that means he’s breathing. That’s a sign of alertness and it’s also a sign that there’s a good chance that he can come off the ventilator. This is where I was going with this in the beginning. You know, when somebody is sedated, chances are they can’t come off the ventilator. And the more awake your son is, the higher chances he can come off the ventilator. Right. And that’s why I’m sort of still suggesting that better sooner than later they should stop all sedation to make a proper assessment of, is he opening his eyes, is he responding, is he squeezing fingers, if you ask him to. Have you or the team ever tried that?
Ron: He hasn’t done any of that.
Patrik: You’ve tried that?
Ron: He hasn’t squeezed fingers or anything. His eyes are kind of open, they’re not really focused but they’re kind of open, and then he’ll have them closed. The doctor will come and try to shake him, on his chest, and say “Daniel, Daniel”.
Ron: And he kind of opens up, they’re kind of opening.
Patrik: Yeah I understand. Okay. So there are no other complications as far as you’re aware, there are no infections.
Ron: Well you know he has a VK virus, I told you. He had that going on. He had like a rhino virus.
Ron: He tested for that at one point.
Ron: Which is for the common cold or something. Well they test his pressure and spinal fluid pressure. That was normal. That was normal. It was negative for any infections or anything in his brain.
Patrik: Right. Okay. Okay. The other risk when somebody is on a ventilator is simply that the risk for pneumonia is pretty significant. And again, that’s why I sort of feel so strongly about, the sooner you can take somebody off the ventilator, the better, just because of all of those risks. With his stem cell therapy, there would’ve been a level of weakness of the immune system, I would imagine.
Ron: Yeah. He was having chemotherapy.
Patrik: But that hasn’t been anything recent, has it?
Ron: He had that in May of this year.
Patrik: Yeah, sure, sure. So that means his immune system, by the time of the cardiac arrest would have been back to a normal level?
Ron: No, it was still trying to get there, because he had a suppressed immune system.
Patrik: Right, right.
Ron: That’s probably why he wasn’t able to fight the VK Virus.
Patrik: Right, I see. Right. Okay. Okay. Well, that’s good that after 11 days of ventilation, there hasn’t been any infection. That’s a good sign because again, the risk for pneumonia, for example, or for any other infection really in intensive care is there because you know you’re exposed to a lot of other box in the environment.
Patrik: Is this ICU like an open space, or is he in his own room?
Ron: In his own room.
Patrik: Good, good. That means he’s sheltered. Well, he’s sheltered from box from other patients, as long as the medical and the nursing staff wash their hands and wear gowns.
Ron: Yes, that’s what they do.
Patrik: If they do all of that, he’s sheltered from any exposure to other box.
Patrik: What would be good at some point, would be if you could send me a picture of the ventilator, just so I can have a quick look. So I can have a quick look at what he’s exactly up to. I have emailed you a Glasgow Coma Scale. Did you receive it?
Ron: Yeah, I have it.
Patrik: Right, right, right. I think it would be good for you if you can open it up and I can quickly talk you through it because it’s going to be an assessment that, the more you understand about that assessment, the better it is for you to sort of gauge the responsiveness of your son. Can you open that up on your phone?
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Ron: Yeah, starting from top to bottom, I would say, I’ve seen them open. I don’t know if that’s spontaneously. But it’s not what you think, say open your eyes, it’s not speech. It’s not so much like a pinch and a pain. I can’t say it’s a response, because he did open them. I don’t know why, but he did.
Patrik: Yeah. Yeah. But if he has eyes open without you asking for it, then that counts as spontaneous.
Patrik: Right. So if he’s opening eyes without you prompting him, that is spontaneous.
Ron: Well, okay.
Patrik: If he had his eyes closed and you would say, “Hey, can you open your eyes?” And he would open them, that would be to speech. Okay. But if he’s opening them without anybody prompting him, that is spontaneous.
Ron: Even if when they suction him, he responds?
Patrik: No, no, no. Then it would be to pain. Then it would be to pain.
Ron: Okay. When they suction him, he felt that, and like I said, opened his-
Patrik: I see. So, the eye opening is really only to stimuli.
Patrik: Right. Okay. Then it’s probably a two. Let’s do a conservative assessment for now. So let’s just say it’s a two. So it’s a two for eye opening. It’s definitely a one for verbal response because of the breathing tube.
Patrik: So he can’t talk. But anybody with a breathing tube, it’s always a 1.
Patrik: Okay. And then the motor response, where do you think he would be at with the motor response?
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Ron: I’ve seen his leg twitch a couple of times.
Ron: Responding to stimuli.
Patrik: Sorry, what did you say?
Ron: I’m sorry, I’ve got things in my mouth. You can go ahead.
Patrik: You can ask them for the Glasgow Coma Scale. Ask them for it. Now you know what it means, now you know how they assess. You should definitely ask them for… I would imagine it’s probably 3, probably 6 or 7, I would think.
Patrik: It’s 2 for eye-opening. So let’s say to pain, it’s definitely a one for verbal response because of the breathing tube. With what you’re sharing, I would think it’s probably a 3 or a 4. So it’ll probably be abnormal flexion or flexion withdrawal from pain, most of the time when people are in those situations. But you can find out by asking them.
Patrik: The other thing that I believe is really important to know for you, because it is such a traumatic situation, and again, it’s probably something they haven’t shared with you. It’s important to know that more than 90% of patients in intensive care survive. Okay. That is really important.
Ron: I said that’s not what I got from them, you know?
Patrik: Right. No, no, no, no. I can send you some statistics, right? So more than 90% of patients in intensive care do survive. The reality is that most intensive care teams are very negative, and that probably what you are referring to.
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Patrik: Right. They’re very negative for a number of reasons, including but not limited to, trying to manage their beds. So their worst case scenario is to look after a patient indefinitely with an uncertain outcome. That is their worst case scenario. But basically having a patient in ICU that’s occupying a bed for weeks, sometimes for months, and they don’t know what’s going to happen. Right. Will that patient recover or not? That is their worst case scenario. And by being negative, they’re almost trying to prevent their worst case scenario. They’re keeping your hopes down by doing so. And it also sort of keeps their options open in terms of communication if they are negative.
Patrik: Right. So it is very, very important to read between the lines. Very important.
Ron: Yeah. So you know, what I get is I’m not forcing you into anything or trying to push you to do anything, I’m letting you know what the situation is and what the outcome looks like. That’s what I’m saying.
Patrik: Yes, yes. The problem is, in a situation like that, potentially brain damage, as long as there are no signs of waking up and as long as there is no definitive answer for the MRI or for the CT brain, it’s a question of how long is this piece of string, how long will it take for your son to wake up?
Patrik: Right. And that’s why they will always be erring on the side of caution to the point where they will be extremely negative. Right?
Patrik: Imagine they came to you on the first day and they would say Oh, Ron, we will definitely get your son out of ICU alive. You know, we’ll definitely do this, this, this and this. It would be impossible for them to make that promise. Right.
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Patrik: And it would potentially bring up your hopes, and they might not necessarily be able to deliver. Right. So however, again, after having worked in the environment for nearly 20 years, yes patients do not survive intensive care, but the overwhelming majority is surviving intensive care. More than 90%, okay. And that is so important to know. And again, the ICU wouldn’t share that with you because you know it may not necessarily be in their interest to do that.
Patrik: So that is important to know. One of the challenges that I can see with everything that you’ve shared, is your son may wake up or he will wake up at some point, but there is no timeframe around that at this point in time. Which is why I’m so adamant that they need to stop sedation and get an idea of, can he wake up? What does it look like if he does wake up? If the waking up process takes longer, then it’s convenient for the ICU. They may put all sorts of pressure on you, including doing a tracheostomy, sending him out, including potentially stopping life support, all of that. So you just got to be prepared for that because people don’t know that this could potentially be coming.
Patrik: Right. But I am pleased to hear that so far this hasn’t been a point of discussion, and it shouldn’t be a point of discussion, but again, having worked in the environment for so long, it could become a point of discussion.
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Ron: Right. Okay.
Patrik: So we see-
Ron: I got a few photos. would you like me to send it out to you?
Patrik: Say that again?
Ron: You wanted a few photos, you said?
Patrik: That would be great if you can take a photo of the ventilator as well as a photo potentially off the drips that he is on.
Ron: Right. I took a picture of all that. The ventilator, the drips, and-
Patrik: That should be enough. That should be enough. The ventilator and the drips, that should be enough.
Ron: And also his monitor that shows-
Patrik: Yes, his monitor would be good as well. It doesn’t have to be right now. If you can, you can. If not, you can send it later.
Ron: Am I sending it to your number.
Patrik: Yes. Yes you can. Yes. You can send it to the my number, or you can email it. One way or another, is fine. Whatever’s easiest for you.
Ron: Okay. Okay. I’m going to actually send them all right now so you have them.
Patrik: Yep, yep. No, no, that’s fine. Your son, at the time of cardiac arrest, was an inpatient in the hospital that he’s in now?
Patrik: Right. Okay. And at the time of the cardiac arrest, do you know, and I use the word now that you may or may not have heard before, perhaps they mentioned how long the downtime was. Have you heard the term downtime?
Ron: No. I haven’t.
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Patrik: Right. So what that means is, when somebody is having a cardiac arrest, depending on how quick they can respond, there may be a downtime of a minute, 3 minutes before they start CPR.
Ron: Yeah. I’m listening.
Patrik: Okay. And there hasn’t been any mentioning that there has been a delay in response?
Ron: A delay in his response?
Patrik: No. No. A delay in their response to the cardiac arrest.
Ron: Well, they don’t know exactly the time frame as to how long, but I understand they came rather quickly.
Patrik: Okay. Okay. Yep, yep, yep. And was there a time lag between their response, and your son’s heart starting to beat again? Do you know whether there has been a response in that regard?
Ron: Well I think they had to kind of resuscitate him. They had to resuscitate him. The nurse was actually in there when happened, she saw that he kind of shot up and shot back down and shot up, and he went down and he liked she quickly called emergency response, and they came rather quickly from ICU.
Patrik: Yep. Yep. Sure, sure. Okay. Okay. Are you aware of a 3 minute time window through a cardiac arrest? Are you aware? Have you heard of that? The 3 minute time window?
Ron: Yeah. Yeah.
Patrik: Right, right. That’s why I’m asking. If there has been a delay and if for whatever reason they couldn’t re-sustain perfusion or cardiac function within 3 minutes, there is the potential for brain damage. Right.
Patrik: Because the brain can’t be without oxygen for longer than 3 minutes. And that’s why I’m sort of asking, is there any evidence that there has been a delay? Is there any evidence for a downtime?
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Ron: Other than the MRI being shown? No. Really the only thing they have to go by, what the MRI shows and his response, I guess.
Patrik: Yep. Yep. Okay. Okay. Okay, sure. The reality is that, I’ll give you another example, when people are in an induced coma right, after surgery, or after an accident, and there is no brain damage, it could still take them sometimes weeks to come out of the coma. Right. Again, it’s just giving you perspective that patients in an induced coma without brain damage, it can sometimes take them weeks to come out of a coma.
Patrik: So the suspicion or the potential for brain damage, it’s probably just aggravating the issue. But it’s just something to be mindful of.
Patrik: We see an ultrasound of the heart with echocardiography of the heart. How long ago was that? Are they doing this repeatedly?
Ron: Yeah, they did that right after it happened. They brought him down, they did that right after it happened. They did it again a few days later, I believe. A day or two later.
Patrik: Right, right. And it always came back negative.
Ron: Yeah. It was pretty normal, I’d say.
Patrik: Yep. Yep.
Ron: Nothing really spiked too high, like his blood numbers were pretty normal. It jumped a little, but came down. But everything else too alarming.
Patrik: Yep. Yep. And they didn’t, at the time… Sometimes what happens after cardiac arrest, they send patients to an angiogram. Have you heard of that?
Ron: What is that again?
Patrik: It’s basically, they’re putting up a catheter towards the arteries of the heart to find out whether there are any blockages or not. That hasn’t happened, as far as you’re aware?
Ron: No. No.
Patrik: Okay. Okay. It would have been another procedure, you would have been aware if it had happened, because it would have been another-
Ron: No, they didn’t have that.
Patrik: Okay. Okay. So are they stimulating him.
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
- You’ll get real world examples that you can easily adapt to you and your critically ill loved one’s situation
- How to stop being intimidated by the Intensive Care team and how you will be seen as equals
- You’ll get crucial ‘behind the scenes’ insight so that you know and understand what is really happening in Intensive Care
- 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!
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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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