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

How to manage seizures in Intensive Care after a haemorrhagic stroke!

You can check out last week’s episode 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 (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 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 episode of “YOUR QUESTIONS ANSWERED”, I’m talking to James again about how he and his family should manage his confusion, aphasia (inability to speak) and his disturbed breathing pattern.

James wants to know what’s the best course of action in how to get his Dad more awake, how to manage his anti-seizure medications without being prone for seizures.

Today’s consulting and advocacy session is another excerpt 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

How to manage tracheostomy, confusion and seizures in Intensive Care for your loved one after a stroke!

You can also check out previous episodes of the 1:1 consulting and advocacy questions with James and Christine here

Part 1

Part 2

Part 3

Part 4

James: Hey Patrik.

Patrik: Hi James, how are you?

James: Good. How are you?

Patrik: Very good, thank you. How has your day been?

James: Busy.

Patrik: Right.

James: Every day is busy.

Patrik:  Right. And your dad, are you still in the hospital?

James:  I’m sorry?

Patrik:  Are you still in the hospital?

James:  Yes.

Patrik:  Right.

James:  It’s going to be … it’ll probably be awhile before we go anywhere. They put him back on the ventilator tonight. They said his breathing was a little heavy, like in the 40s, like 40,-

Patrik:  Yeah, that’s…

James: when he was sleeping.

Patrik:  Okay.

James:  Is 40 high?

Patrik: 40 breaths per minute is high. It should be less than 30. Should be less than 30 breaths per minute.

James:  It seems to be during the day.

Patrik:  Sorry?

James:  It seems to be during the day. Less than 30 or in the 30s.

Patrik:  Right and that’s a sign that he’s tired. That’s a sign that a day of … He had the whole day of off the ventilator?

James:  Yesterday he did. I think after they put him on the Dialysis today that they took him off, I don’t know, maybe around 11:00 or something.

Patrik:  Yeah, that would-

James:  He’s had about 12 hours off.

Patrik:  Okay. For the first time? Was that the longest time he’s had off the ventilator?

James:  No. I think yesterday he was off from, I think 8:00 in the morning to 11:00 at night.

Patrik:  Okay, that’s good. From that perspective, he’s allowed to be tired because he’s in the early stages of weaning. He’s allowed to be tired. He’s had two big days off the ventilator, basically going from zero to be off the ventilator within 48 hours. He’s allowed to be tired.

James:  Okay.

Patrik:  He’s been out of bed?

James:  He did not get out of bed today.

Patrik:  But he’s still managing-

James:  He was yesterday.

Patrik:  Right. But he still managed to stay off the ventilator for most of the day.

That’s still good. That’s a good sign.

James:  Right.

Patrik:  Was there a reason why he didn’t get out of bed?

James:  Well, you know, we hear different things here every day. It’s been kind of a challenge. The last few days if he needs to get out of bed because we want to mobilise him and then today it was, we don’t really do that in the ICU, that’s more for step-down-

Patrik:  Really? That’s …

James:  or you know for …

Patrik:  Oh my goodness. That’s just ridiculous. That’s ridiculous.

James:  Right.

Patrik:  So they think they-

James:  That’s what I’m saying.-

Patrik:  Do they think-

James:  We don’t really-

Patrik:  Do they think they are beneath mobilising patients? That’s ridiculous.

James:  They just said, “The ICU is for the ICU and mobilising patients is really for step-down or another room or rehab.”

Patrik:  I disagree with that completely. I disagree with that completely.

James:  I’ve gotten a lot of push-back here. I’ve had to do a lot of very intense arguing and confrontation this week.

Patrik:  Right.

James:  I can be confrontational when I need to be-

Patrik:  Oh yeah.

James:  I had to get  very nasty with everybody as a matter of fact because it was just becoming overwhelming. As a matter of fact today, the LTAC woman, my sister overheard them in the hallway calling our family crazy and just saying that my father is never going to be able to do four hours of therapy at a rehabilitation clinic.

Patrik: Can I just say, if they are calling you crazy take it as a compliment because you are asking all the right questions, you are an advocate for your dad, and they don’t like it. It’s as simple as that. That it as a-

James:  I had to write her a very stern email threatening to sue her for libel and slander. I said, “You can’t walk around the hospital saying that I’m crazy or my family’s crazy when we’re just trying to do the best thing for our father.” It could interfere with his health. A doctor could jump on that or something. She came and apologised and then she relieved herself. She said, “I’m going to relieve myself from your project.” It’s like every day it’s non-stop. It’s like a non-stop fight with these people. I don’t understand why they can’t just do what they’re supposed to do. They really want that fucking bed, for God’s sake.-

Patrik:  Of course they do.

James:  My father had a major brain bleed and it’s like wean him off the ventilator and get him to step-down so I can get him to rehab and do your job. Don’t just stick him in an LTAC and make him comfortable until he dies.

Patrik:  Exactly, exactly. You’ve got to take this as a compliment because you have way more insight than anybody else. Don’t take it personally. It looks like …

At this stage I’m bound to say you have bought some time and if they’re putting an arterial line in and a central line, he’s not going anywhere. He’s not going anywhere.

James:  Yeah. I don’t know. I understand that. That’s the thing too, I mean they tried to move him to a LTAC two or three times now and he had a seizure and now he’s got an arterial line in. It’s like everything I go back there, I get more angry because I’m like it was just yesterday you were trying to discharge him.

Now he had another life-threatening problem today. When are you guys going to get that you’re wrong?

Patrik: Exactly. Exactly. As I’ve said, you do want to buy time but at the moment, with the things they’re doing, they’re buying you time. With-

James:  You don’t think they’re buying us time intentionally, do you?

Patrik:  No, no. No, no. I don’t think they’re doing it intentionally because he needs that. They think he needs it. I don’t think it’s intentionally. I think it’s clinically. What I am saying, at the moment he’s not … as long as he’s got an arterial line and a central line he’s not going to LTAC. That’s what I’m saying.

James:  Right. Another thing I’ve wanted to talk to you about real quick is aphasia.

Patrik:  Aphasia.

James:  Right now I’m very confused on what degree of aphasia he has. That for me is the most frustrating thing because he’s not really responding to commands but sometimes he does when he wants to but he makes a lot of facial expression.

Today he was literally ready to fight someone in the ICU. I couldn’t keep his hand down. He wanted, trying to pull the cords out. He’s very strong and he was very angry. Like if I tried to grab his hand, he was trying to get away from me and he was yelling at everybody, all the doctors, everybody that came in. I don’t know if he was delirious.

He didn’t have the speaking tube in so you couldn’t hear anything but he was moving his lips non-stop like he was just very angry. I’m trying to figure out what degree of aphasia does he have. Is he understanding me? Is his brain understanding? Does he have the words to speak? Does he not know what to say? Can he not get the words out? I can’t get it … no one’s with him long enough to really tell me what part of the aphasia he’s in.

Patrik: I guess there’s two way, or two types of aphasia in this situations. There’s the one type of aphasia is he can’t talk because he’s got the tracheostomy. If he didn’t have the trachea he might also not be able to talk because of the stroke. I guess at this point in time it would be very difficult to make that assessment, which one is which. If that makes sense.

James:  Right. Well they put the speaking valve back in him today and he got a couple words out like I said, “Dad you can’t lift your arm up.” And he said, “Why?” And I said, “Because you’re going to rip the cords out.” And he said, “No.”

Patrik: Okay. That could be a sign of confusion and delirium. I’ll come to that in a moment. Can I just ask, you mentioned something in the email, he’s got mittens?

James:  You know Patrik, I can’t hear you that well. Say again?

Patrik:  Okay, sorry. You mentioned something in your email like that he’s got mittens. Can you …

James:  He’s got one mittens on his left arm. The other arm doesn’t work.

Patrik:  Oh, I see. And that’s probably irritating for him, isn’t it?

James:  Yeah, very.

Patrik:  What’s they’re reasoning behind that?

James:  Another thing too … So he doesn’t rip the cords out of his mouth and off his chest?

Patrik:  Would he? Do you think he would?

James:  Oh, absolutely.

Patrik:  Okay. All right.

James: He’s tried to several times. He’s got like a glove on.

Patrik:  I see. Oh yeah, I know.

James:  You know, like a-

Patrik:  Like a mitten.

James: He had a glove … He’s so adamant about getting the glove off now that he’s fighting it. He’s brings the glove up to his mouth to try to bite it to try to pull it off of his hand. He’s biting it hard, he’s not nibbling it. He’s taken a big chunk out of the glove. I can’t get it of his mouth…

Patrik:  Right, right. I see. Okay. After about four weeks … how long has it been now, five weeks?

James:  Yeah, five.

Patrik:  Okay. There comes a point, the longer patient stay in ICU, there comes a point where they get delirious. Have they mentioned something like ICU psychosis? Have they mentioned something like that?

Related article/video:

• THE 5 THINGS YOU NEED TO KNOW IF YOUR LOVED ONE IS CONFUSED, AGITATED AND DELIRIOUS IN INTENSIVE CARE!

James:  No, but they mentioned he could be kind of delirious.

Patrik:  Yeah. Do you know how they are treating the delirium? Are they giving him anything? Do you know?

James: No, they’re not. But they did mention that they wanted to give Zoloft.

Patrik:  Are you sure they’re not giving him stuff like Haloperidol or Quetiapine or Diazepam, any of that? Have you heard of that?

James:  Like a tranquilliser?

Patrik:  Yeah, like a tranquilliser. You don’t think they’re doing that?

James:  No, I don’t think so.

Patrik: Okay. All right. With the level of frustration you’re mentioning, I’m not surprised. The longer he stays in ICU and the longer he’s aware of his surroundings, the more frustrated he will get. The sooner he can move to step-down, the better it is. But in order to move to step-down, he probably would have to be off the ventilator and, with the central line and with the arterial line he’s probably not going to step-down anytime soon. But he also won’t be going to LTAC (Long-term acute care).

James:  Well, Patrik I’ve got to go, my sister is calling. I’m going to call you right back.

Patrik:  Okay.

Watch out for the next consulting session with James in the next episode of “YOUR QUESTIONS ANSWERED”

See you then!