Dad has ICU Psychosis and ICU delirium after 5 weeks ventilated with tracheostomy! How can he get back to normal?

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 one of my clients and the question in the last episode was

Dad’s going to step down after 5 weeks in ICU! Where should he go to next?

You can check out last weeks question by clicking on the link here.

In this week’s episode of “YOUR QUESTIONS ANSWERED“, I want to continue answering the next questions regarding James’ and Christine’s Dad in ICU who’s had a haemorrhagic stroke.

James’ and Christine’s Dad had a brain decompression where they evacuated a large bleed from his brain after the haemorrhagic stroke. And their Dad also underwent a craniectomy (partial removal of skull) to decrease the brain pressures after the bleed.

James’ and his sister Christine were getting their Dad in one of the best hospitals in the USA, the Cleveland clinic in Ohio.

In the meantime, their Dad was getting a tracheostomy because he couldn’t be weaned off the ventilator and the breathing tube. He also had a PEG tube for feeding inserted.

He also had ongoing seizures due to the stroke and his anti-seizure medications needed to be optimized so he could “wake up” and progress to Neurology Rehabilitation.

In today’s 1:1 consulting and advocacy sessions with James and his sister Christine, we look at some setbacks their Dad is going through.

He had to be put back on the ventilator due to a Pneumonia and he also ended up with a central line (CVC) and arterial line again.

In the meantime he has come off the ventilator but still has the tracheostomy after over 5 weeks in ICU.

This series of 1:1 consulting and advocacy is a real testimony for getting advice, run with it and get results.

If you want to avoid LTAC and a nursing home for your loved one, you need to read all of the consulting and advocacy sessions with James and Christine!

So in today’s episode of “YOUR QUESTIONS ANSWERED”, I answer a series of questions from James and his sister Christine again that are excerpts from various 1:1 phone/email consulting and advocacy session with me and the topic this week as part of this series of 1:1 consulting and advocacy session with me and the topic this week is

Dad has ICU Psychosis and ICU delirium after 5 weeks ventilated with tracheostomy! How can he get back to normal?

You can also read or watch previous episodes of 1:1 consulting and advocacy with James and his sister Christine here

Patrik: Hi James, it’s Patrik here! How are you?

James: Yes.

Patrik: Is that better?

James: Yeah, it is.

Patrik: Okay. If that doesn’t work we go on Skype. I’m on a train at the moment and will be going through a couple of tunnels which may be part of the issue. But anyway, carry on.

James: How long are you going to be on the train for?

Patrik: Probably for about another 15-20 minutes and then I’m going to be in a meeting so we might as well keep talking.

James: Is ICU psychosis the same as ICU delirium?

Patrik: Pretty much. Pretty much.

James: So what, you’re just basically like having like a panic attack where you don’t know where you are?

Patrik: There’s a bit of that but the main reason for an ICU psychosis is really, you know, all the side effects of the drugs but also things like no natural daylight, disturbed day and night rhythm because there’s lights on almost 24 hours a day, noise almost 24 hours. It’s a combination of all of that.

James: So what do you do about it?

Patrik: Take patients out of ICU as quickly as we can, but not necessarily to LTAC (Long-term acute care). So I don’t believe that giving drugs is the answer. It’s really a matter of … That’s why this whole thing about mobilisation is going forward, because the closer you can get to a natural state, the better it is.

James: Okay. Do you think that it’s safe to bring him … They were talking about bringing him to the rooftop to get him some air-

Patrik: Oh, I think that would be fantastic.

James: … would be in the sun. Do you think that …

Patrik: I think that would be fantastic.

James: Do you think it’s safe?

Patrik: If he’s in an ICU and he has a couple of nurses going with him, yes, they can make it safe for him. I do believe they should be doing that, definitely.

James: What would that have going for him?

Patrik: Oh, imagine, fresh air, daylight. It’s better than any medications. Better than any medications. Has he had a shower?

James: Well, they bathe him but, no, he hasn’t actually gone in a shower.

Patrik: Oh, well, he needs to go into a shower. They can put him on trolley and they can shower him. I would hope they have something like that there. That would help him, too.

James: Even with his skull missing?

Patrik: Yeah, absolutely. Absolutely. Absolutely.

James: You can run water on that?

Patrik: The only thing they have to be careful about is that no water will go into the tracheostomy. That’s the only thing they have to be careful about.

James: You can run water on the part of his skull that was taken off?

Patrik: Oh yeah. But even if they think it’s a risk, keep the water off his skull but it’s not a risk. Not a risk.

James: The respiratory therapist said that when he put the speaking valve in today, I didn’t hear him but the respiratory therapist said that he said to him, “I want to go home.”

Patrik: Yeah, I’m not surprised. That’s why I think stuff like, you know, having a shower, having some natural daylight, get on the rooftop, I think it’s very important. He wants to go back to normal and he’s frustrated.

James: What type of aphasia to you think he has?

Patrik: The speech therapist says he has said he wants to go home. Is that what the speech therapist said?

James: Yeah, but … No, the respiratory therapist said that.

Patrik: Okay. Well, I mean, that’s a clear sign, and that’s a sign … I mean, can he say more than that? Do you think he can say more than one sentence? What’s your impression?

James: No, absolutely not.

Patrik: Right.

James: Maybe yes … He can say like yes, no, because.

Patrik: Right.

James: Things like that but it’s even hard to get those words out for him.

Patrik: Right, I see.

James: Most of his words are just gibberish.

Patrik: Right, right. Okay. So are you therefore almost questioning what the respiratory therapist told you? Are you questioning that?

James: No, not really. I just don’t think I’ve spent enough time with him and I think it’s too early to tell. I mean, based on what I’m telling you with his level of responsiveness and everything else, what type of aphasia do you think he has and do you think he has any chance of comprehending or speaking again?

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Patrik: Probably, comprehension would be one issue but I think, I really think that with the aphasia, it’s very difficult to say what type of aphasia he has with the tracheostomy. It’s very difficult because you can’t really assess whether he would be able to talk if he didn’t have the tracheostomy, let alone if he was talking constantly, would it make sense. So it’s very difficult to make that assessment, really.

James: Well, I just told you though. He’s got the speaking valve in so you can hear him and he’s not … He’s talking but he’s not making any sense.

Patrik: Yeah, yeah, yeah. Well, that means that ultimately he doesn’t have aphasia, he has dysphasia. What that means is … Aphasia means he can’t speak at all. Dysphasia means what he says doesn’t make sense. That’s the difference.

James: So do you have any opinion on a prognosis?

Patrik: No, no, I don’t. But it’s good that he’s saying some words and that’s why I keep coming back to the neurology rehab. That’s why I believe it’s so important. If he could get off the ventilator and then all they could focus on is the neurology rehab, and focusing on things like talking, eating, drinking, all of that, that would be a much more meaningful recovery, wouldn’t it?

James: Yeah, I suppose.

Patrik: Right. I’m in a tunnel at the moment. If I drop out I will call you back as soon as I’m out of the tunnel, but as long as we can keep talking it’s all good.

James: Okay.

Patrik: As I said, that’s why I think the focus on the neurology rehab … You know, they keep talking about LTAC but they still haven’t mentioned the neurology, have they?

James: No.

Patrik: Have you brought it up with them?

James: The neurological rehab?

Patrik: Yeah, yeah.

James: Yeah, I have. They said they’re going to, you know, try to get him off the vent, get him to step down, and then get him to the neurological rehab.

Patrik: Okay. So they basically have plan A, to get him to LTAC, and plan B is to get him neuro rehab. So your job is to make sure, you know, I mean not your job, but you’re working on that already, to get him off the ventilator and then they can get him neuro rehab. That should be the preferred option.

James: Gotcha.

Patrik: Right? So I’m glad they’re not sort of shutting you down at least, when you’re talking about neuro rehab, because I believe that’s definitely the preferred option.

James: But they should be mobilising him then, right?

Patrik: Oh absolutely. Absolutely. Have they given you a-

James: Do you think … Go ahead.

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Patrik: Have they given you a reason why they didn’t mobilise him today?

James: Well, I think he was just, you know … They put the line in. They thought he had an infection and, you know.

Patrik: No, no, that’s okay. That’s okay. He’s had two days off the ventilator for the very first time and he’s allowed to be tired. He’s allowed to be tired, so that’s okay.

James: And you think going up to the rooftop is acceptable?

Patrik: I think so. I think so. As I said, anything that’s making him more closer to things that he would like enjoy doing, I think is a win. Imagine you’ve been stuck-

James: Gotcha.

Patrik: Imagine you’ve been stuck in this ICU bed for five weeks. No daylight, no fresh air. It’s terrible.

James: Yeah, but he’s really been awake for, you know, say a week-and-a-half, two weeks maybe.

Patrik: Of course. Yeah, of course. But still, I think anything that could be enjoyable for him, he’s going to benefit from that.

James: You know, the weird thing is that when they took him on the helicopter, he was sound asleep in New York, when they put him on a helicopter and brought him here, it really seemed to wake him up.

Patrik: Right. Okay, but then … But that wasn’t … That was in the early stages of this whole event.

James: Right. But still, I mean, I’m surprised that even woke him up.

Patrik: So look, I do believe that, on the one hand, he’s making progress, which is he’s been off the ventilator for two days, at least daytime, that’s good. What’s worrying me is obviously the infection, especially since they haven’t found a source. That’s a big of a worry. But, I mean, a week ago you wouldn’t have thought your dad would be off the ventilator for two days in a row. You wouldn’t have guessed that.

James: Right. No, I agree.

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Patrik: Right. So the positives are there. There are some negatives but, as I said to you, two steps forward, one step back. Are you there?

James: Patrik?

Patrik: Yes.

James: How often can they check his white blood cell count?

Patrik: Say that again please? How often …

James: How often can they check his white blood cell count?

Patrik: Oh, every day. They will check … They’ve been checking it for every day probably since he’s been there. Probably every day. But they could even check it several times a day if they want to.

James: I don’t understand why they put the thing in his neck today, though. I mean, he had … I think he had elevated white blood cells before and they were putting in the central line (CVC) in his neck. Two weeks ago when he had pneumonia. Why didn’t they put it in his neck then?

Patrik: That’s interesting. He might have had it in his groin. So, you can have it in the groin as well instead of the neck. That might be-

James: No, I think you’re right.

Patrik: That might be one of the reasons.

James: So what? After you put it in the groin once you can’t put it in again?

Patrik: It’s fine. Either way is fine. You can put it in the groin or in the neck. It doesn’t really matter which way you go. Often, it’s an anatomical issue. For some patients, it’s easier to do it in the neck. For others, it’s easier if you do it in the groin. If he had it in the groin last time, they would have chosen the neck this time. Absolutely.

James: Why?

Patrik: You don’t want to go into the same location again. You know, you destroy tissue-

James: Infection?

Patrik: Infection, all of that.

James: Okay, that’s make sense.

Patrik: Yeah.

James: Gotcha.

Patrik: If he’s not on inotropes/vasopressors like Norepinephrine, Epinephrine, I’m a bit surprised that they put a line in straight away. I am a little bit surprised.

James: They’re not taking any chances but they do seem a bit disorganised here. They’ve got a lot going on in that ICU.

Patrik: Right. Yeah, most ICUs have a lot going on. But, look, two steps forward, two days off the ventilator, that’s very promising. Infection? That’s a bit of a step back, but I’m not surprised by it. Patients in ICU are very prone to infections. The good news I get from your perspective is as long as he has an arterial line and a central venous line (cvc), he’s not going anywhere. He will stay in ICU.

James: Gotcha. All right Patrik, I’m going to back there and just make sure he’s okay and then I’m going to get some sleep, but I appreciate the time.

Patrik: Oh, you’re very welcome. You’re very welcome.

James: I’ll let you know what’s going on tomorrow.

Patrik: Yeah, absolutely.

James: You’ve been very, very helpful. I really appreciate all your help.

Patrik: Thank you.

James: You’ve given very good explanation and the emails are very helpful. It’s nice to be able to read things and show it to my family.

Patrik: Absolutely, absolutely.

James: You offer a very, very good service. I’m very happy.

Patrik: Thank you. Thank you very much. Thanks for the kind words.

James: Yeah. I’ll give you a buzz tomorrow. Maybe we can Skype?

Patrik: Yeah, we can do Skype tomorrow yeah. Okay. Have a good night.

James: Okay Patrik, have a good night. Bye-bye.

Patrik: Thank you. Thank you bye-bye.

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