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 week’s episode of “YOUR QUESTIONS ANSWERED” I want to answer questions from one of my clients Walter, as part of my 1:1 consulting and advocacy service! Walter’s wife had a stroke in the ICU and has a tracheostomy. Walter asks if it’s true that his wife won’t ever speak again after tracheostomy removal.
The ICU Doctor Says that My Wife Won’t Ever Speak Again After Tracheostomy Removal! Is that true? Help!
Patrik: Hello. Patrik here of Intensive Care Hotline.
Walter: Hi Patrik!
Patrik: Hi Walter! So let’s talk about your wife’s condition.
Walter: Yes, my wife is in the hospital right now and the doctor thought she had a stroke. Also, it might have been COVID. We don’t know.
Patrik: Right.
Walter: She had a tracheostomy. She’s been in four different hospitals. We’re not being treated well.
Patrik: Right.
Walter: They want her in long-term care and they don’t care what long-term care it is.
Patrik: Right.
Walter: And I’m not going to let it happen, I hope.
Patrik: Right.
Walter: And now they just told her yesterday that if she has an operation to take the trach out, she will never speak again. And we had been told that, you can speak if you have the trach out. So we’re terribly upset and disappointed about that.
Patrik: Right.
Walter: So please, you take over. Please.
Patrik: Let me just clarify a few things. Is she still in ICU? Or when you say she’s in hospital, where is she?
Walter: She was in the ICU.
Patrik: Okay.
Walter: And then she was in a nursing home.
Patrik: Right.
Walter: And she was 4 days in the hospital after the ICU. Then she was 15 days in a hospital, in a small town. I don’t mean hospital, I mean a nursing home. And at that time, she fell out of bed 8 times in 6 days and came out of those falls with a stridor like this.
Patrik: Sure. Right.
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Walter: Nothing was wrong with her when she left the hospital.
Patrik: Okay.
Walter: She did not have a trach in.
Patrik: Right.
Walter: She did not.
Patrik: And that was after pneumonia/stroke?
Walter: Well, I don’t think it was pneumonia.
Patrik: Do you think it was a stroke?
Walter: No one ever said. I think she’s not a sick person.
Patrik: Right.
Walter: So, she never gets the flu, never gets anything wrong with her. And she fell right straight to the floor. I think it was a stroke.
Patrik: Okay.
Walter: And then I was not allowed to see her for 4 weeks. Anyway, then she went to that first nursing home. And then when I realized that she had the stridor, I called the doctor and the doctor said, “Call an ambulance and get her to a very good hospital.” And I did that and then that’s when they put the trach in. And she was there for almost 7 weeks. And then they sent her to a place that’s another horrible nursing home and the people were feeding her because now she was getting better. And they were feeding her too fast. And she also lost a lot of brains when she was in the coma.
Patrik: Yeah.
Walter: And so, she’s a chemist. She’s not a foolish, stupid person. She’s getting her brains back, but I don’t think she’ll ever. And she can’t now, of course, she can’t walk. She can’t really move. She can’t really turn herself over. There’s a phone call. Oh, it’s the hospital calling. Can I just go over there and see what they’re saying?
Patrik: Sure.
Walter: And then I’ll be right back to you.
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Patrik: Hi, Walter.
Walter: Hello? Hi. Thank you for being there.
Patrik: Oh, pleasure.
Walter: That was the hospital, a new person calling me, and I told her I’d call her back as soon as I could. But it’s probably a social worker. She said she thought I had concerns.
Patrik: Sure.
Walter: Yeah. So I do.
Patrik: Right.
Walter: Okay. So you want to begin?
Patrik: How long has she had the trach for now?
Walter: a little more than 3 months.
Patrik: Okay. Why do they want to remove it?
Walter: It’s because they want to get rid of her, out of the hospital, and I want her to come home. What’s your thought about that?
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Patrik: I still need to gather more information. She’s been off the ventilator for quite some time?
Walter: Oh yes. Since, let’s see, I believe a month after.
Patrik: Great.
Walter: She was off the ventilator for 5 weeks.
Patrik: What has stopped them from removing the trach so far?
Walter: That is a good question. I think causes them to hold onto her, and to get her to the next place that extracts a lot of money from Medicare and the government. That’s what I think.
Patrik: Right. Why, all of a sudden, do they take it out now?
Walter: Because, at this hospital, there is a… There’s another part of it, and it’s a rehab hospital. They said that they could get her off the trach and better again and speaking. Well, she’s speaking already, but, now, yesterday, there was a communication on the computer that’s in her room saying that the only options are that she would be… If they take the trach out, she won’t ever speak again.
Patrik: That doesn’t make sense.
Walter: And if we… It doesn’t make sense?
Patrik: Is she talking, at the moment, with the speaking valve?
Walter: Absolutely. Trying very hard, yeah. Sometimes if she’s just eaten and she might’ve aspirated a little, or she needs to cough, then she can’t quite get it out, but she’s getting better and better at speaking. Her mind flow is better and better, and she’s watching everything. She’s like a little detective, and she was never like that before. But she’s in the mode of watching on her own behalf, and then reporting to me because she thinks I’m her enforcer, which I am.
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Patrik: Okay. Does she still need any suction?
Walter: Yes.
Patrik: How often?
Walter: It looks like it’s a lot less. I’m not there all the time, but it’s nothing like it was in the beginning when she had it laying over her stomach, and she could just take it and suction herself. It’s not even available for her to suction now. It’s up on the wall.
Patrik: Right. Is she mobile? She’s walking?
Walter: Oh, no, she can’t.
Patrik: She’s bed-bound.
Walter: She’s totally atrophied now.
Patrik: Right. She’s bed-bound.
Walter: Yes.
Patrik: Right. But if you ask her to squeeze your hands… If she will squeeze your hands, if she-
Walter: Oh, of course. Yeah.
Patrik: Yeah. Okay. And she’s got a good, strong cough?
Walter: I believe that’s about cognition. The cough. She’s got a pretty strong cough, but I believe that she almost forgets because it’s so hard to cough. Then she gives up a little.
Patrik: Right. Okay.
Walter: I prompt her. When I’m there, I prompt her. “Got to get a bigger one,” that kind of thing. “Do it again.”
Patrik: Right. Is she on oxygen?
Walter: No.
Patrik: Okay.
Walter: She’s on the tube of, what it… Humidifier. She’s on it. You know what it is.
Patrik: Yeah. Why do they want to do an operation to take the tracheostomy tube out? They should just be able to remove it.
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Walter: What?
Patrik: Yep, absolutely. It should just-
Walter: I did read one of the websites I saw. It says bedside removal-
Patrik: Absolutely.
Walter: …But I didn’t think. Oh my God. I don’t know where we’re going to..
Patrik: Unless there is some complication, but… Did they do a surgical tracheostomy or a percutaneous tracheostomy? Do you know?
Walter: I don’t know what that is.
Patrik: Did she-
Walter: I know that they made a little cross across and cut open her neck, and it went through her windpipe.
Patrik: Yep, sure. Did she go to theatre, to the operating room for the tracheostomy or-
Walter: I don’t know the answer to that. I wasn’t there because I was on my way.
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Patrik: Were you-
Walter: …To that hospital, but the first time they let me see her, she already had it. So I don’t know if she was in the operating room.
Patrik: Right. Were you the one giving consent to the tracheostomy?
Walter: I never gave consent to it. I just found out that they had done it.
Patrik: Right. I can’t see… Has she had speech therapy?
Walter: Well, they call respiratory and speech the same person, I think.
Patrik: They’re not the same person, even though some of what they do overlaps.
Walter: Yeah. I don’t know the answer to that.
Patrik: Fair enough.
Walter: I don’t think she needs… She doesn’t need a lot of speech therapy. She just needs to heal that throat.
Patrik: Yeah, definitely. It’s not… Removing a tracheostomy tube is very rarely an operation unless there is a risk that came up out of… I don’t know why. I would argue, maybe one out of 20 tracheostomy removals might need surgery. I would… Yeah. You know?
Walter: No. That’s pretty interesting
Patrik: It doesn’t make any sense to me.
Walter: Okay.
Patrik: In terms of her never being able to speak again, again, I question that, unless there is something that you don’t know or they haven’t shared with you. Most people that have the tracheostomy removed can talk. If she-
Walter: What do you do for a living?
Patrik: I’m a critical care nurse by background.
Walter: But you know all this stuff?
Patrik: I’m not making it up. I’ve done it for 25 years.
Walter: Oh, of course. Oh my God. This is unbelievable.
Patrik: Are you the one needing to give consent to the tracheostomy removal?
Walter: I don’t think they take my consent or my-
Patrik: They have to.
Walter: I think they just would-
Patrik: They have to.
Walter: Well, maybe they’re taking my wife’s consent.
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Patrik: Can she give consent?
Walter: Well, I have the power of attorney.
Patrik: Yes, but do-
Walter: But I guess it doesn’t-
Patrik: Do you believe that she’s cognitively intact so she can give consent and make the right decisions?
Walter: No.
Patrik: Right. Okay.
Walter: No.
Patrik: If that is the case, then you are the one needing to give consent, and that means, if you are not consenting to a tracheostomy removal, they shouldn’t do it. Now, here is what I would recommend as a next step. I do believe that you and I should get on a call with whoever is making medical decisions there.
Walter: Okay. A three way call?
Patrik: Absolutely.
Walter: Why are they going to regard you as somebody that I… Just because I said it?
Patrik: Well, I would-
Walter: I said, “I want you to talk to this person,” and they’re going to say, “Well, this is between you and…” I mean, these people are… I don’t know how to explain it, but they are right and you are nothing.
Patrik: Oh no, no. Okay. So here is how to approach this Walter.
Walter: Ok I will listen. Thank you.
The 1:1 consulting session will continue in next week’s episode.
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This is Patrik Hutzel from INTENSIVECAREHOTLINE.COM and I’ll see you again next week with another update!