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 in coma in ICU and Isabel is asking if the neurologist can best help her husband improve his condition.
My Husband is in a Coma in ICU. Can the Neurologist Best Help Him Improve His Condition?
“You can also check out previous 1:1 consulting and advocacy sessions with me and Isabel here.”
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.
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.
Isabel: And then she says, “It’s not in the progress notes, so I don’t know where you’re hearing that information from.”
Helga: That’s right.
Patrik: I tell you what a good question should be for you going forward, Helga and Isabel. I would always ask for the Glasgow Coma Scale. Isabel if I email you the Glasgow Coma Scale as well, it’s fairly self-explanatory, but I think that’s sort of a good objective measure where he’s at.
Helga: Yeah, I think the highest he was rated was a six, Dr. Dy had rated him as low as a three on last week. Dr. Charles rated him a six. I’ve been asking the nurses each time, we spoke to that night nurse and she said, maybe a four or five or something was the highest. And then yesterday we spoke to Dr. Abril, I asked her and she had told me a four or five, but then she made it very quickly to say, “But the clinical bedside exam is higher than the Glasgow Coma Scale.” Or that they kind of go hand in hand, but she’s going off of what she gets out of the stimuli that they’re doing and the responsiveness.
Patrik: Okay, okay. A four or a five is pretty low, but in a four or five there would be some eye opening in there. There has to be some eye opening in there.
Helga: She said that they had to give him a point because of that, because of his eyes being open. From the chart I read, it’s eight or less, is considered comatose, which is consistent with where he’s at. So, we understand it. I’m hoping that when we advocate for the physical therapy, that that Simulation will help wake him up some more, if it’s going to.
Patrik: Yes, definitely. He needs some simulation. After all this time in the coma, it’s minimal movement. When people are on ECMO, they can’t really move them because they’ve got all these big lines in their tummy and neck and groin, so you can’t really move them. So, now that’s gone away, now they have to start moving him.
Patrik: And moving arms and legs goes a long way, in the recovery of somebody that’s coming out of a prolonged induced coma, goes a long way. But if it’s not happening, I believe it’s one of the biggest obstacles of getting patients out of ICU.
Helga: Isabel are you good with that?
Helga: Okay. Yeah, I know she’s shared that, the longer they were in coma, the longer, basically the longer they’re in this state, I don’t know if it was unlikely that they come out, or just that the longer it is, it’s harder for them to come out or something, of it. So, I can see why the physical therapy is crucial, that they start now.
- The 5 Mistakes you are unconsciously making if your critically ill loved one is in an induced coma and is not “waking up”!
Patrik: Crucial, absolutely crucial. And this leads me back to your question before, or what we talked about before, “Should he go back on ECMO, if the lungs, God forbid, deteriorate,” Again, he would go back into that position where they can’t really move him. Right. So, they’re all very difficult questions to be answered, but with without being too confrontational, it’s also reality. Yeah, you can save lives in ICU, that’s ICUs are very good at saving lives, but what are the potential consequences of that If it’s not progressing forward as rapidly as everybody would like.
Helga: Okay. I think I made a note, you said that within, you said that right now, I guess we just kind of understand you, waiting for the brain, the brain report from the neurologist.
Patrik: Very much so. And I feel like a neurologist, needs to talk to you. Obviously depending on the findings. Maybe they’re coming up with different finding, but if it’s a negative or if it’s a finding that confirms there is some brain damage, I don’t believe it should be the ICU interpreting those results. ICUs are designed again to save lives, but the neurologist is the one that’s dealing with a brain injury long term.
Isabel: So, we should talk to the neurologists directly.
Patrik: Oh definitely! Definitely.
Helga: So, the phone call she gets should be from them?
Patrik: I would hope so. I would hope so. Or if the phone call is not from them, maybe it’s ICU talking about the results, but then also saying, “Okay, can I liaise an appointment with the neurologist, I believe that should be the next step.” Because ICUs, let’s just say there is brain damage or the brain damage is confirmed. ICUs can be very quick then in saying, “Okay, I don’t think that Noel would have any quality of life with this brain injury.” Right. And that could be an ICU point of view, but then the neurologist says, “No hang on a second I’ve seen this before.” This is where we’re going with this. The neurologist is the one that sees this long term, ICU doesn’t see the outcomes long term.
Isabel: Okay, so when they call, hopefully, I’m not sure when they’re going to call, but we’ll give you a call.
Patrik: So, definitely some, I mean, definitely some positives from the last call. Lots of steps forward, it’s now a case of looking at the next challenges.
Patrik: Is this the first time, you as a family, experience having somebody in intensive care.
Helga: In our immediate family, Yes. My uncle, who was the eldest, my mom’s older brother, he was in ICU three years ago. And that was, I wish we had known about you then. But he actually deteriorated after going to that second facility. He was healing and doing good, and then I guess he wasn’t getting the care or something happened, but then he passed there. That was our first death in our family, so to say. And then this is the first time we’re dealing with somebody on the younger side, that’s not elderly. And this is, like I said, our immediate family.
Isabel: Yeah, this is definitely my first time dealing with something like this.
Patrik: And it’s traumatic, it’s confrontational, it’s-
Isabel: It’s very traumatic.
Patrik: Traumatic. Yeah, And The whole COVID situation doesn’t help that you can’t visit. It’s difficult if you can visit, very difficult if you can visit because it’s still confrontational. But now you can’t even be there, because I believe, just simple things like holding his hand, I believe it goes a long way, goes a long way.
Isabel: Yeah. I know, we do our Zoom visits, and we pray that he hears us but having to touch him and be there and feel like another human body that connects with you is so different than a Zoom visit. There’s no comparison.
Patrik: Very much so.
Helga: Isabel plays music too, because my brother’s a musician. And so that’s something that’s really, since a kid the stories have been he’s just been a natural musician and so we’ve played some of his own music, and hoping that tugs at his heart somewhere. And reminds him, because it’s like runs, we would say runs in his blood, right. Anyway, we’ve been playing music for him and talking to him. And we shifted from before, now, they think the original calls were really emotional, now we’re trying to just speak to him, normal things that are, I’m trying to talk him about normal stuff and like what we had for dinner, what the kids are doing, and just trying to be positive and talk to him that way.
Patrik: Yeah. And I think that’s also important, and I know that is so much easier said than done. It is important to stay positive, it’s much easier said than done because it’s so confrontational. But I believe staying positive is important.
Isabel: And it’s very, very challenging to stay positive when you know what we’re up against. I see it very challenging. Through my faith and through praying, and getting on my knees and just pleading with God, it’s still challenging.
Patrik: Very challenging.
- WHAT YOU AND YOUR FAMILY NEED TO DO IF YOUR CRITICALLY ILL LOVED ONE IS VERY SICK IN INTENSIVE CARE AND FACES AN UNCERTAIN FUTURE WITH THE POSSIBILITY OF FUTURE QUALITY OF LIFE IMPAIRMENTS
Helga: Patrik, I have a question regarding, I mean, I know you’ve given us so much advice, which is, I think, very helpful. It helps clarify, I think, my mom, Isabel, and I agree that when things come from you, we feel that they’re not biased with the agenda of getting my brother out or getting him off. We feel it’s something we can trust. That it’s easier to trust what you’re saying, if it validates what they’re saying too. So, thank you. That’s why we all kind of agreed on, “We really need this especially these next few days and we need to get what does he think or what should we be asking”.
Helga: Now as far as the days, because I know we got the four days this time. Today how does that, what’s going to be considered the first day of that call?
Patrik: Yeah. Look, I really look at it in a 24-hour period. If you need me in a 24-hour period five times, you’ll need me five times and you might only need me one-time tomorrow. I don’t know. I’m not strictly counting four days. I really want you to get value out of this. I understand, look, when clients sign up for this, I do understand sometimes clients might need me five times in a day, and then they only need me one-time tomorrow, they might only need me five minutes the day after. I’m not counting this as a day. So, I really want you to get value out of this. Please reach out to me when you think it’s needed. I’m sure that I can work with you, so that you are satisfied.
Helga: Thank you. I just wanted to verify so we know.
Patrik: Yeah, no, absolutely. Absolutely. Yeah.
Helga: Isabel, did you have any other questions?
Isabel: No, no. I just want him to be on the call when we get the results.
Helga: Now if they, let’s say call tonight and Patrik was unavailable, do you think it’d be okay to ask them if they could, if it wasn’t urgent to talk to us tomorrow or something? Or what would you think we should do? I’m just asking if he’s not available.
Isabel: I don’t think that’s a good idea.
Patrik: I’ll give you another suggestion. Can you potentially record a phone call?
Helga: Try think of how you could do that.
Patrik: There are some apps out there.
Helga: On the phone?
Helga: Like if I’m on the phone, recording the actual phone call?
Helga: Okay, I can look it up. I’m pretty savvy with apps.
Patrik: Have a look, and that could be another option. I will definitely try and answer, I do answer the phone, if I’m not on another call. Definitely call me. But another option could be just to record a phone call. That could be an option.
Patrik: Then you could email that to me, and then we can, once I’ve had to listen, we’ll get back on another call.
Helga: Okay, that sounds good.
Isabel: So, what time is it over there, your time?
Patrik: For me it is, at the moment, it’s 11:00 a.m. For me it’s Friday. For you it’s Thursday evening, for me it’s morning. But again, it shouldn’t stop you from calling me, doesn’t matter. I’m talking to people all over the world every day. So, I’m used to different time zones.
Isabel: Okay. But what if you’re more comfortable like if they call in two hours. I know it’s not like one o’clock in the morning.
Patrik: You call me when you feel like you need, you call me. Don’t worry about time zones.
Helga: Thank you.
Isabel: Thank you.
Helga: That’s all right. All right.
Isabel: I think we’re good.
Helga: Okay. All right. So, if we hear from them tonight, we’ll call Patrik and try to join him if he’s available. And then if they don’t call, then tomorrow then it’ll be late for him. Okay.
Patrik: Okay. All right. I hope you get a positive report, and go from there.
Helga: Thank you. Thank you very much.
Patrik: Thank You. Talk to you soon.
Isabel: Bye Patrik.
Patrik: Bye, bye.
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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)
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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