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 episode of “YOUR QUESTIONS ANSWERED” I want to answer a question from one of my clients Isabel as part of my 1:1 consulting and advocacy service! Isabel’s husband is on a ventilator and is still not waking up in ICU. She is asking what is the best treatment plan for him alongside doing a tracheostomy.
My Husband is Ventilated in ICU and is Not Waking Up. What Is The Best Treatment Plan For Him Alongside Doing The Tracheostomy?
“You can also check out previous 1:1 consulting and advocacy sessions with me and Isabel here.”
Patrik: Because the tracheostomy just gives people time to maintain an unstable airway. And that’s what it is at the moment, he’s got an unstable airway. Tracheostomy is just to say a device to manage an unstable airway for longer periods of time.
Helga: Right. Because the ventilator is just shorter term.
Patrik: And the ventilator could be longer term, with the tracheostomy as well. But then you’ve got, with a tracheostomy, you can take it on and off, yeah you can do that at the moment as well, but it’s just higher risk.
Helga: Isabel, do you have anything, any concerns or worries about that? You want to ask? Because I know when they first mentioned it before he was on, where he’s at now a few weeks ago. It was a scary thing. I want to make sure your questions are answered about it.
Isabel: Yeah I had concern about it all, because they cut the throat and put the tube that way, but at the same time I was more uncomfortable with him having damaged his vocal cords. So, I’m okay, I mean, if it’s something that needs to be done, but my concern is the MRI results. Honestly, it really is going to determine which direction we’re going to go, to be honest with you.
Patrik: Yeah, for sure. For sure. It will more or less determine which direction it’s going. It will determine where is he going next. Do they think there’s a realistic chance of him waking up in a reasonable timeframe? If there is brain damage the waking up process will be delayed with an uncertain outcome. So, there’s all these question marks for sure.
Helga: But even, regardless of that, if the neurology should still be trying to get, you said his job is to find or to suggest a treatment plan for his brain, and rehabilitation should be part of that process, so we should still be asking or advocating for physical therapy, and the tracheostomy because of weaning him off the ventilator as well as it being easier to do the movements for physical therapy.
Patrik: Very much so.
Patrik: It’s such a shame that you can’t even be sick, I mean, that’s part of the whole debacle at the moment everywhere, people can’t be sick, they can’t see their loved ones. You can’t see in a Zoom meeting, I believe, how awkward this breathing tube Is if you walked into an ICU, you would probably see some other patients walking by that have a tracheostomy, you would see immediately this is just a better long term option.
Patrik: However, and this is where there’s also a risk that I see with a tracheostomy that I believe you need to be aware of. The risk is not so much clinical, when patients in ICU have a tracheostomy, ICUs often want to send people out fairly quickly. Have you heard of LTAC?
Isabel: No. I just saw it on your website, I think, a little bit recently.
Patrik: Yeah, yeah. So, LTAC stands for Long Term Acute Care. And basically what a lot of ICUs are doing, I’ll just quickly type this in so you can see it, what a lot of ICUs do is they send people to a Long Term Acute Care facility. And in your situation that needs to be the right one. Right. Because especially since neurological rehabilitation, brain rehabilitation, all of that, and also what often happens is those LTACs are two hours away from where people leave. I’m just trying to prepare you for what might happen.
Helga: So, is that what we want to happen, or we don’t want him to go there?
Patrik: We want a tracheostomy but we don’t necessarily want to go to an LTAC, especially if it’s not the right one, especially if it’s two hours away from where you are. I mean at the moment you may not be able to visit him anyway because of the COVID.
Patrik: LTACs might have the same restrictions.
Helga: Is that something that Isabel would be able to have a say in?
Patrik: Yes, and no. ICUs as you know, they can be very pushy. Right. They can be very pushy and they want to have things done their way. If it’s the right LTAC I wouldn’t be opposed to it, but you often don’t know whether it’s the right LTAC until you’ve been there. And if it’s two hours away, how do you find out.
Helga: Is there a way to research locations?
Patrik: Look, for sure, and they would give you hospitals.
Patrik: They would give you options.
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Patrik: All right. They would give you options. It’s a very difficult situation, it’s almost like you’re stuck between a rock and a hard place in terms of the next steps. And a lot of it is dependent on the MRI result.
Helga: I know Isabel asked about how to rate the anoxic brain injury, the doctors told her that they couldn’t really, they didn’t have a range or something, it wasn’t easy to say. It was either it is, or it isn’t. But from just what I’ve researched a little bit about it, is an anoxic brain injury period can take a long time. I don’t know MRI results with that, I just saw in general, that they could take six months or something to rehab. Now I’m sure that the person is doing other things, but it’s still mentioned that. So, is there an argument there that we can use to? What is the goal, we want him just to have more time, to give him to see if he’s really going to wake up. Right?
Patrik: Yeah. So, I’ll tell you where I can see this is going. So, let’s just say he can’t come off the ventilator in the next couple of weeks, let’s say he can’t. Okay. And then you might have the added on complexity of the anoxic brain injury. So, you have two major issues that he’s dealing with. Number one, he can’t come off the ventilator. Number two, he’s not waking up. Okay. So, it would be so much easier if he could come off the ventilator, then you could only focus on the brain rehabilitation. If you have to focus on both, that’s the challenge. Right.
Patrik: And if you have to focus on both, the right facility for that will be hard. It is hard to find. It’s easier to find a facility just focusing on weaning off the ventilator, and it’s easier, looking at the long term plan, just to focus on brain rehabilitation. It’s difficult doing both at the same time.
Patrik: There’s very few facilities out there that do both.
Helga: Now with having a tracheostomy, is that the same thing? Is that the same category as coming off the ventilator?
Patrik: Yes, and no. So, some patients need a tracheostomy without a ventilator. They need it because they can’t swallow, right, and if they can’t swallow, they would aspirate, they would swallow their own saliva into their lungs. Right. And that would give them a pneumonia. So, some patients need a tracheostomy because they can’t swallow, other patients need a tracheostomy because they can’t breathe. And sometimes it’s a combination of both. In this situation, it could be a combination of both if there is a brain injury and he can’t come off the ventilator for the obvious COVID issue.
Helga: Got it. Okay.
Patrik: But, given that he’s now off of ECMO, that’s a good sign.
Helga: I know we were kind of I mean, I’m thankful, but I was definitely surprised to get the results of off of it, to then stable. We pretty much didn’t believe them, we were like, “Are you just trying to get him out, out of there, like what? Right Isabel?
Helga: We just couldn’t believe that overnight, over two different nights, he would have two big changes like that.
Patrik: Yes, yes. Yeah, definitely. Definitely. So, look those are the challenges that I can see are ahead. And I tell you another thing, and again, this is bigger picture, but I believe you need to be aware of it. So, if he’s heading down the road of a tracheostomy, Noel’s health plan might also say, “Now he’s got a tracheostomy, he needs to leave ICU.” There could be that too.
Helga: And now, even if he’s not awake?
Patrik: Yes, even if he’s not awake, and that’s when then the neuro rehab comes in.
Helga: Neuro rehab, okay.
Helga: So, that’s where we would want a facility that specializes in neuro rehab if he’s on a tracheostomy and off the ventilator?
Patrik: Yeah, and that can be a challenge. There are very few facilities out there that do both. Not saying it’s not there, but it’s just harder and that’s why I believe you need to get a neurology input as quickly as possible.
Patrik: So, what might happen is once a tracheostomy has been done, ICU would probably say, “let’s move out of ICU, rather sooner than later.” And then the next steps I believe are critical, selecting the right facility is critical.
Patrik: And then, from what I know from the environment at the moment, as much as ICUs want to push people out, on the other hand, I do know there are some facilities at the moment, they don’t take COVID patients. So, there could be a delay anyway. Right. So, at the moment, it’s a very uncertain environment, because of the whole COVID situation.
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Patrik: But there are, not to sugarcoat anything, he’s taking the first step, he’s off ECMO, but there are many challenges ahead. There’s no doubt about that.
Isabel: Now, are you going to be on the call Patrik, when we get results?
Patrik: I can be. What time?
Isabel: That’s just the thing, we never know when they’re going to call.
Patrik: Sure. Look, when they call you just call me. Helga, you’ve got my number. Or Isabel I’ll give you my number. You just call me. Would be good if you can give me a notice, but if not, it’s ok. I’ll give you my number there.
Helga: Okay, I have it.
Patrik: But I mean, on the positive note, I mean, on the weekend, it looked pretty grim, he’s taking the first steps. And that’s positive. In being off ECMO on the weekend, I thought it’s, No, I wouldn’t have thought It’s impossible, but I would have thought It’s sort of 50/50.
Helga: Yeah, you definitely would. We were supposed to be getting a call, between today or tomorrow, from ECMO to talk about why he was still on it, if he was still on it, basically. They had given us two or three days.
Patrik: Yeah. Yeah. That’s certainly positive. And have they talked about and again, looking at all directions, have they talked about if, God forbid, if he was to deteriorate with his lungs, have they talked about starting ECMO again? Is that a question you have asked?
Isabel: No. But that’s a question his mom had too.
Patrik: Yes, I believe so on the weekend. It sounds like he’s heading the right direction, but, look, you got to look at all angles I guess.
Helga: So, that’s the thing we ask them?
Patrik: I think so.
Patrik: Because what’s happening again, in the environment at the moment, treating COVID is new for everyone. Nobody was treating COVID a year ago, they have no idea. Can they take someone off ECMO, and they get off the ventilator then? Nobody knows that yet. They have no data around this.
Helga: Now, would you suggest that if his lungs did go backwards, that we ask for that?
Patrik: I tell you what I think about that. Very rarely have I seen somebody going back on ECMO second time, I have seen it on the odd occasion. I haven’t seen it very often. The risk of things to go wrong the second time on ECMO is fairly high. It’s not a risk free procedure, if anything there’s a high level of risk attached to it. But again, they don’t have enough data in terms of treating COVID patients. On another note though, when someone is critically ill, I talked about the deconditioning a moment ago, if he goes back on ECMO, he will be staying in that sort of deconditioning situation for longer. A recovery would take even longer. But again, it really depends on where you stand as a family in terms of, what quality of life would be acceptable for you going forward with Noel, what would he accept himself. Would he be happy to survive, but potentially be dependent on other people for a long time to come, or maybe for the rest of his life?
Patrik: Those are questions that need to be answered, that you sort of might have to look at. If he doesn’t progress forward now, if he goes backwards, or even stays stale for a period of time. You see, ICUs are very good at saving lives, they’re not so good at looking ahead. Saving a life is one thing, dealing with the consequences of saving a life is another thing. Because a recovery after saving a life is very rarely straightforward. And if Noel only leaves ICU alive, ICU has no idea what happens from there. They lose track. Right. I can share a little bit of insight there.
Patrik: Here what we do, where I am, we are running a service in the community intensive care at home, we are looking after long term ICU patients at home. We are certainly dealing with patients that have been in ICU for a long time they’ve survived, but they are dependent on life support, they are dependent on other people. Right. And I’m not here to judge what people want, I’m not here to judge what quality of life is acceptable for people. We are just offering solutions for people that want this service. Now we can’t help you where you are, but I’m just sort of painting the bigger picture. Right. What could happen down the line, and what it might look like. Am I making sense here or?
Isabel: So, this is the looking forward if, after looking at everything we talked about like with MRI and all of these other things, if there is no progress as far as the brain cognitive function, then considering what he would need basically. I get what you’re saying, it’s just hard to say.
Patrik: It’s very hard, look it’s very hard and nobody wants to look at that, but the reality also is that the prolonged critical illness comes with very undesirable side effects. Again, ICUs are very good at saving lives, right, but nobody looks at, “Okay, what’s the price of survival?” And I’m not meaning that in monetary terms, I mean that in, “What’s the price the individual and the families have to pay in terms of consequences.”
Helga: So, we will be looking at that if, depending on the results of the MRI and after advocating for stimulation and physical therapy, if there was no response to that, and deterioration of certain things, at what point do we keep intervening basically?
Patrik: Very much so.
Helga: Okay. So, that’s just for us to look at, a little bit down the line, not right now. What I see, we need to wait for the MRI, which Isabel said, depending on, they told her they may call her tonight, they may call us in the morning, because we don’t know. Right, Isabel.
Helga: But the questions that I see that you told us, that I wrote notes were, has he had a blood transfusion? Have they changed any of the treatment on his lungs? Is there an infection? Where’s the source of the infection? Is there bacteria growing in the blood, or urine, or sputum? Is he on heparin, because of ECMO?
Patrik: Heparin yep. Not because of ECMO, but because of the dialysis.
Helga: Oh, because of dialysis. Okay. Is he on heparin? Is that what a vasopressor is?
Patrik: No, no. A vasopressor is, stimulating the blood pressure. Okay. A lot of patients in ICU have a low blood pressure that’s not compatible with life. And one way, and that’s probably why ICUs are so good at saving lives, they’re giving those vasopressors to maintain a blood pressure that’s compatible with life.
Helga: Okay. I understand that he’s here because of ICU, has saved his life. Because there’s many things that have, he shouldn’t have survived naturally.
Isabel: Hey, be quiet.
Helga: Sorry. Now, the MRI would show us if there’s brain damage, where it’s located. And then asking if his lungs were to go backwards, then what would be the treatment plan? But that’s the list of everything that I have.
Patrik: Just let me have a quick look at my list. You talked about, earlier, that you’re talking to the nurse regularly?
Isabel: Yeah. I mean, I usually get an update from the doctor every day, of how his progress is. And she kind of did that for us today earlier before he went in to the MRI.
Helga: The night nurse was when we had called to set the Zoom. She gave me an update.
Isabel: Oh, yeah. She informed me without me even asking questions. She just kind of made it a point not to put up pictures.
Helga: Because she was taking care of his eyes, and putting gauze over. She had told Isabel what’s the point his eyes were closed with the eye covers. And so I kind of jumped on to help, emotionally support Isabel because, you felt a little bullied by her, right? Like you’re funny or something.
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Helga: I think she meant it that way, because she said…
Isabel: Not making fun, but just really crushing my spirit and making me feel like, she was making fun of us when we thought he was moving his eyes when we call to him or when we talk to him. And she was laughing and said, “He’s not moving his eyes, I don’t know what you guys are seeing, but he’s not moving his eyes.”
Helga: She said she was standing right in front of him, and that from our angle it looked like it, but she was looking at him and it wasn’t happening. And then that’s when I kind of told her “Well hang on, the doctor and another nurse also acknowledged that there is some eye movement to his name or to loud noises. So, you may not have seen that, but it’s also not consistently always happening, you could have missed.” And I took her, I got a video.
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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
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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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