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
The ICU Doctor Is Negative about My Sister’s Condition, But Why Does the Cardiologist Think Differently About My Sister’s Recovery in ICU & Is Not Even Pushing for
End-of-Life?
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 Mikaela, as part of my 1:1 consulting and advocacy service! Mikaela’s sister is with a tracheostomy and is
ventilated in the ICU. Mikaela is asking how long does it take for someone to recover from hypoxic brain injury.
How Long Does it Take for My Sister to Recover from Hypoxic Brain Injury?
“You can also check out previous 1:1 consulting and advocacy sessions with me and Mikaela here.”
Part 1
Dr. Toni: It's all right. No, not a problem. The line's a bit quiet. Can you hear me all right?
Mikaela: Yeah. It's okay. Can you hear me?
Dr. Toni: Yeah, I can hear you. Yes. It's just a little quiet, but it's all right. I think you wanted a bit of a chat in the capture. Is now a good time or do you want to... The other thing I was kind of thinking is whether we should organize to actually meet with you face to face at some point.
Mikaela: No, it's fine over the phone. It's fine.
Dr. Toni: Yeah. But I think you were wanting information about what we're finding in assessment. Is it your sister, isn't it?
Mikaela: Yeah. It is, yeah.
Dr. Toni: Yeah.
Mikaela: Was it... Are you part of the neurology team then?
Dr. Toni: Yeah. I'm a neuro rehab consultant so, and I work for the acute neuro rehab team.
Mikaela: Yeah.
Dr. Toni: And I myself is a senior occupational therapist, a senior physiotherapist.
Mikaela: Yeah.
Dr. Toni: We have quite a long experience of looking after people who've got significant brain injury after cardiac
arrest.
Mikaela: Yeah.
Dr. Toni: We don't have beds ourselves in the hospital. So people will... I think assuming that she gets off the ventilator, she's likely to come down to the neurology ward and she'll be under a neurologist, but it would be me and then our team doing a lot of the assessments and ward
therapists looking after her.
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Mikaela: How is it... Okay.
Dr. Toni: With cardiology input because she is likely to need to go with a tracheostomy in.
Mikaela: Yeah.
Dr. Toni: Which cardiology don't have the expertise to look after tracheostomy. So it's slightly... But it's a pathway that we've used a lot in the past with patients in different situations. So it won't be under me, but I will be seeing a lot of it, if you know what I mean. Assessing her. So I've already seen her quite a number of times on the intensive care unit.
Mikaela: So are you one of the senior neurology consultants then?
Dr. Toni: Yeah. I'm a consultant in rehabilitation medicine, not a neurologist per se. But it's me that's got the expertise in people with disorders of consciousness and hypoxic brain injury. So I'm not actually a neurologist,
I'm slightly different.
Mikaela: Okay.
Dr. Toni: But it's definitely my domain rather than neurology.
Mikaela: Rather than neuro... Because it was just a bit someone that we would, from neurology to have an understanding of how the brain works and such that we'd need to speak with more than anything.
Dr. Toni: Yeah. That's me. Definitely me. Yeah.
Mikaela: Okay.
Dr. Toni: I work as part of the neurosciences services. Yeah, my training is in rehabilitation medicine rather than neurology, but the neurologist, it would be the person to talk to about it. It's me that the neurologist would refer to things about disorders of consciousness and hypoxic brain injury.
Mikaela: Yeah.
Dr. Toni: Have you got anyone from your family? You know this yourself and...
Mikaela: Yeah.
Dr. Toni: Is your dad with you?
Mikaela: Yeah. I've got my dad hearing me.
Dr. Toni: Okay. Brilliant. Are you the sort of, are you two nearest and dearest for her?
Mikaela: Yeah, we are.
Dr. Toni: Yeah. Is it Mikaela that you like to be called or..would you like to be called..
Mikaela: Yeah. It's Mikaela.
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Dr. Toni: Okay.
Mikaela: So I think most work with the nurse looking after her this morning.
Dr. Toni: Okay.
Mikaela: I think she managed 12 hours without the ventilator yesterday.
Dr. Toni: Good. Yeah.
Mikaela: Yeah.
Dr. Toni: I think she will. She's very likely to wean from the ventilator.
Mikaela: Yeah.
Dr. Toni: She's not having a lot of support now.
Mikaela: She was on the sprint ventilation.
Dr. Toni: Yes.
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Mikaela: From what I understand. So she was on very minimal settings to begin with anyway. I think she's taken a bit long to come off because of her situation. She is not fully awake.
Dr. Toni: It reflects the... Yeah. She's not conscious.
Mikaela: Yeah.
Dr. Toni: Not fully conscious. Yeah.
Mikaela: So I was just going to ask, I spoke with a cardiologist yesterday.
Dr. Toni: Okay.
Mikaela: So obviously because you are in neurology, but they thought you might give me a bit more clearer understanding.
Dr. Toni: Yeah.
Mikaela: So with the new cardiologist yesterday, she mentioned the GCS was, it does go up and down, but the highest it's been is at 8. I don't know whether you saw that for yourself.
Dr. Toni: I've not seen her... So the assessments that we will be doing with her are a little bit more detailed than GCS. It's a bit of a, I don't find that a terribly helpful measure in this situation. We've got more detailed way of assessing somebody who was not fully conscious. So I would say she's got a persistent disorder of consciousness now.
Mikaela: Yeah.
Dr. Toni: ..and as a result of the hypoxic brain injury. So, we have slightly more comprehensive ways of assessing a disorder of consciousness. We have a range of ways of doing that. When she's still on the intensive care unit in quite early days and not able to sit out and those kind of things, there is a limit to what you can do to assess.
Mikaela: Right.
Dr. Toni: But essentially I've not witnessed anything other than spontaneous purposeless movements. Like she has some eye movements that are spontaneous but then not to a stimulus like. So she's not able to track anything that I put on. If I facilitate eye opening and try and get her to track something moving or put things in different parts of the visual field, she can't focus or track a moving objects at the moment.
Mikaela: Okay.
Dr. Toni: Not that she respond to threat if you move something very rapidly towards her.
Mikaela: Yeah.
Dr. Toni: She doesn't exhibit a blink response sort of thing.
Mikaela: Yeah.
Dr. Toni: All of the responses that I've seen so far are reflexes.
Mikaela: Okay.
Dr. Toni: So that they're essentially reflex responses to something. So she has a very low level from a neurological perspective at the moment.
Mikaela: So the times that we speak with her on video call and such and when we see her, she does tend to look in our direction.
Dr. Toni: Yes.
Mikaela: And I don't know whether it resonates obviously because of how severe the injury was, but there was, let's say she does take the information in to an extent, I think. Because she does have these emotional, she does cry often.
Dr. Toni: Yeah. That's a really common thing with disorders of consciousness. You get laughing behaviors, crying behaviors, even sort of vocalizations and things. They tend to be spontaneous.
Mikaela: Yeah. I think so. It depends really. It's more on certain subjects. If dad was talking to her of serious, previous experiences and what we've done together as a family, that's generally when she is sort of crying at the most or being upset the most.
Dr. Toni: And again, it's hard to know whether she feels upset or whether it's... You'll see lots of spontaneous... As time goes on, you'll see more and more spontaneous kind of behaviors. I get the reason why most people would want to sort of go through what she's gone through is that you would hope that over a time, what the sort of ideal scenario would be is that she'd be able to develop some kind of ability to make different responses
deliberately, if you like.
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Mikaela: Yeah.
Dr. Toni: That we could turn into a yes or no, for instance.
Mikaela: Yeah.
Dr. Toni: That's a long way above where she is at the moment.
Mikaela: Yeah.
Dr. Toni: Essentially at the moment, she's completely dependent on other people for all of her cares. And I think we have to make decisions for her because she has no ability to make a decision. And she is a long way off at that kind of level of cognition.
Mikaela: So...
Dr. Toni: You will see different things to what we will. And there's a sort of a process of assessment that we'll be going through. She's not, she's at such an early level that we can assess her with a range of different sounds, different things to look at, and different things to feel and different sort of positions to be in. All sorts of different things.
Mikaela: Yeah.
Mikaela: Do you carry out the physio yourself as well as the...
Dr. Toni: No. There's a physiotherapy team to do that.
Mikaela: Okay.
Dr. Toni: Yeah. She'll have ward based physiotherapy and she also will have access to the physiotherapist from my team as well in addition. And same with occupational therapists. But it's myself and Rinzzie. You'll hear from her at some point who is the sort of expert on the assessments for people with disorders of consciousness.
Mikaela: Okay.
Dr. Toni: But the assessment process for a range is going to be very difficult because it's been a cardiac issue, it’s physiologically going to be very difficult to assess the tolerance and endurance. This is what I tend to see in her age group of people that survive. It's with this severity of brain injury, it’s the sort of the physical endurance of going through, and having an assessment is quite difficult.
Mikaela: Okay.
Dr. Toni: And some of our most comprehensive measures often we end up not really being able to use because people can't sustain wakefulness long enough or can't think long enough.
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Mikaela: So, what does it involve?
Dr. Toni: So there's various tools that we can use. A various length and complexity essentially. What we will aim to do when, and again, it's too early at the moment because it wouldn't give her a fair crack at, it wouldn't give her a fair assessment to do it whilst she's still weaning from a ventilator. And she's still not being sat and those kind of things.
Mikaela: Yeah.
Dr. Toni: And she still will be physiologically in poor state from just the insults of the cardiac arrest that she had. So we're doing elements of comprehensive assessment to sort of try her with various different types of stimulus to see what responses she makes.
Mikaela: Yeah.
Dr. Toni: It will become more systematic with the way that we do that, and hopefully her endurance goes up. The goal really at this level, is to try and sort out what is in the way you are seeing things like emotional type of behaviors.
Dr. Toni: And I'm seeing things like eye movements and those kinds of things, it’s really actually being able to make an objective judgement as to whether that is something that's purposeless and spontaneous, which isn't useful. If to also know in order to be able to sort of try and establish any kind of communication or with her essentially. So whether it's sort of purposeless, whether it's in any way volitional and purposeful and
whether we can make any discriminating responses or whether we have any potential to try and work towards that.
Mikaela: Yeah.
Dr. Toni: So at the moment she's extremely low level, at the moment.
Mikaela: Yeah.
Dr. Toni: And she's a very long way of being able to engage with any rehab process. So all we can really offer at the moment is assessment. And there's ways of grading it, which will, I think we'll be talking more detail on how we go about assessing this over time. But it is a thing that takes a substantial period of time to..
Mikaela: Yeah. And that's really all that we've asked from the ICU team and from the rest of the doctors and the consultants that I spoke with.
Dr. Toni: Okay.
Mikaela: Yes. She's had over 21 days, coming up to file in the ICU at the moment. But for ICU, I understand it's a long time. But for us it's just, it's very minimal.
Dr. Toni: Yeah.
Mikaela: As a family, because in a sense like, to replace a family member like that, it just cuts a.., given the time. And because it's a brain injury, it needs time for these cells or dead cells to regenerate themselves to an extent.
Dr. Toni: I think that dead cells don't regenerate, but potentially wiring, the wiring in between cells.
Mikaela: On the pathways. Yeah.
Dr. Toni: I agree. It's early days. I think my sort of key messages at the moment is that, currently we're seeing, with the assessments that we've done so far, we've seen nothing beyond reflexes. And that is an extremely worrying sign at this stage, this many weeks in, especially hypoxic injury in her age group. I have to say it has an extremely poor outlook for return of any independence in autonomy. But we can go through the process of
assessing that.
Mikaela: Yeah.
Dr. Toni: I think the assessment process is very likely to be tricky because of the mechanism and even in an older age group than most of our patients. I would say is most people of her age don't survive.
Dr. Toni: And so on the scale of the people who we assess, although the cardiac arrest, she's quite, she's very young. But on the scale of people who get this far down the line and still are alive, she's actually on the older end. It's the young people who survive it for obvious reasons. So she is on the older end and that our experience tells us that assessing people in her age group at this stage is very difficult because her physical
stamina is very affected by it. And the other thing we see is you will undoubtedly see is that she'll develop a lot of medical complications along the line, which will also make things a bit more complex. That she will develop chest infections and other sort of medical things. And you'll have good days and bad days of being a bit less well and having...
Mikaela: Okay.
Dr. Toni: It's going to be a very involved and difficult process for you all. I think that's the only thing I'd say at this stage.
Mikaela: Yeah.
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Dr. Toni: More than happy to offer assessments and do our best to give you more information about what we're finding. And I think it's important that we do meet actually face to face and discuss so we can come up with a system by which we communicate what you are seeing and what we are seeing over time and that we have sensible plans moving forward.
Mikaela: Yeah. We can do that. Yeah, definitely.
Dr. Toni: Yeah.
Mikaela: I was just asking about the..
Dr. Toni: I think we need a bit of time. Really, I don't think I've got anything else to tell you right now.
Mikaela: Okay.
Dr. Toni: I think I'd like to sort of take in a bit more detail through what an assessment of somebody with a disorder of consciousness looks like in the time scales. The time scales of that are trying to be quite protracted. Can run into several months even.
Dr. Toni: And I think.. Again, experience of looking after people in her age group with this kind of scenario is that, it's a very difficult thing because you'll become unwell with various things along the way. And often, whatever you do, often the medical complications, you get someone in the end and they don't survive long enough to be assessed properly. But we're doing what we're doing and we'll do our best to get an assessment done. And
the idea of doing an assessment for somebody with a disorder of consciousness is really to establish whether there is any rehab potential to work with or not. That's it really.
Mikaela: Yeah.
Dr. Toni: As to whether we've got any ability to carry over from one session to another, to learn something or to try and work toward some kind of communication or to operate like a switch or a device or something like that. And there's absolutely no guarantees we'll get anywhere. In fact...
Mikaela: Yeah, no. It's obviously it is just one of the things where we just have to abide by.
Dr. Toni: Duration, it really is. Yeah.
Mikaela: Okay.
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Dr. Toni: I think just to prep you in advance, this is going to be a very difficult time.
Mikaela: To be honest, it's been difficult from this set down.
Dr. Toni: Yeah, it will be.
Mikaela: Circumstances, you know what I mean?
Dr. Toni: No, of course not.
Mikaela: In terms of..
Dr. Toni: We're on your side. We want also to get her the best assessment possible.
Mikaela: It’s been enough, to be honest with, in terms of if you've been on our side or not. It's been quite the fight if I'm honest. Not with you personally, but some of the consultants and such in the ward. I was looking out for her, but ICU or ICU, and they have their regulations and..
Dr. Toni: They will be concerned that the vast majority of people in this situation end up either not surviving the admission or with an extremely poor outcome. That's what their concerns will be. And I absolutely agree with that assessment, but we've got this far.
Mikaela: Yeah, exactly.
Dr. Toni: More than happy to offer the assessment as best we can.
Mikaela: Because its kind of..
Dr. Toni: A lot more difficult than most of the patients that we assess.
Mikaela: On a cardiologist perspective, she's absolutely fine. The only concern is the arrhythmia at the time.
Dr. Toni: Yeah.
Mikaela: Which caused the cardiac arrest.
Dr. Toni: Yeah.
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Mikaela: So, otherwise her heart is intact. I know that she's blocked or anything or there was nothing in terms of her...
Dr. Toni: I think it sounds like it was a primary arrhythmia that caused it. Yeah. It just some an electrical problem rather than a heart failure problem or as you say, actually stirred up or something like that ..
Mikaela: It may. She did get the Pfizer jab. I'm just wondering whether that, because that does cause arrhythmia.
Joseph: Just a week before.
Mikaela: Was it a week before?
Joseph: Yeah.
Mikaela: Yeah. A week before she had it.
Dr. Toni: I find it hard to comment on that.
Mikaela: Yeah. No, obviously it's not your..
Dr. Toni: It’s quite hard to prove cause and effect, isn't it?
Mikaela: I just think it's been made too quickly and it's just, they haven't gone through the proper clinical trials and such and it's just...
Dr. Toni: It's just quite..
Dr. Toni: A separate debate. It's a separate debate, isn't it?
Mikaela: I accept that obviously. They've done what they can in terms of creating the vaccine to begin with, but if it's going to cause complications and they don't even know how it's going to affect people. And this is one of the things. Arrhythmia that they're starting to find out and more people complaining about it, so.
Dr. Toni: Yeah. I don't, I find it... Yeah. It's a separate debate. My priority is to do our best to get an assessment. But to be honest, I think you'll find from our point of view at the moment, our input is going to be slightly limited by the medical things that are going on. We are assessing, but we'll be able to do more...
Joseph: Can I just butt in Dr. Toni? Sorry.
The 1:1 consulting session will continue in next week’s episode.
