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
Your Questions Answered Live: The Pros and Cons of a Tracheostomy in Intensive Care
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 Ronald, as part of my 1:1 consulting and advocacy service! Ronald’s dad is with a tracheostomy and on
a ventilator. Ronald asks why the ICU team is being negative and says that his dad won’t come off the ventilator.
The ICU Team Says my Dad Won’t Come off the Ventilator But I want to Give My Dad a Fighting Chance. Please Help!
Ronald: Maybe a month.
Patrik: A month in ICU, 30 days LTAC?
Ronald: Yes.
Patrik: How long in Step Down?
Ronald: About 14 days, I think.
Patrik: Two weeks, okay. The original diagnosis for your dad was?
Ronald: The original diagnosis, they said that he had COVID.
Patrik: COVID.
Ronald: And then while he was in the hospital, they said that he had a blood clot. They did a surgery, did a couple of surgeries for that, then they put him on the ventilator.
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Patrik: Okay, and COVID negative now?
Ronald: As far as I know, they never had a positive COVID test. They said that because of the type of pneumonia he had, they just assume that it’s COVID.
Patrik: Right, was he in ARDS? Do you know what I mean with ARDS?
Ronald: Like he was unable to breathe, that type of thing?
Patrik: No, ARDS/lung failure. You’re talking about pneumonia.
Ronald: I see that now, yes.
Patrik: He was?
Ronald: I see that in his records now, yes.
Patrik: Okay. Do you know if he was proned? Do you know what I mean by proned?
Ronald: He was.
Patrik: He was for how long?
Ronald: They did that for maybe three or four days.
Patrik: Was he septic? Was he in septic shock?
Ronald: Not that I know of.
Patrik: Not that you know of, okay. I’m just trying to work out… A lot of patients that go into ARDS or lung failure that are proned end up with damaged kidneys.
Wouldn’t be anything new. That’s why I’m asking all those questions. I don’t know how much research you’ve done, we strongly advise against LTAC. Were you happy at the LTAC, overall?
Ronald: No, I didn’t learn about it until after. The thing that I liked about that LTAC is, to me, they gave me some hope. Whereas when he was in the hospital, it was just-
Patrik: They were negative.
Ronald: Very, yeah. And I understand why now, after watching your videos.
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Patrik: Okay. How far away is he from getting off the ventilator, as far as you’re aware?
Ronald: What I was told by the doctor was that he’ll never come off the ventilator. He’ll probably never come home, he’ll probably just stay at the LTAC until he passes.
Patrik: Who’s telling you that? ICU or LTAC?
Ronald: ICU.
Patrik: Is that what they’re still telling you at the moment?
Ronald: That was a couple of days ago when I asked about that.
Patrik: Couple of days ago, okay. Is this the same hospital that he was before LTAC, or different hospital?
Ronald: It’s the same one.
Patrik: It’s the same. Same doctors?
Ronald: Probably, yes. One and the same doctors.
Patrik: Okay. Do you know if he had any time off the ventilator at all? Even if it was only five minutes?
Ronald: Yes. I used to hear reports like that.
Patrik: But you haven’t seen it yourself?
Ronald: No, I have not.
Patrik: Okay. Is your father getting out of bed, is he getting mobilized? Is he sitting in a chair?
Ronald: No, they leave him flat the whole time on his back. And they keep saying, this is his baseline, but it’s not.
Patrik: It’s not, it’s not. Without having seen your dad, it can’t be his baseline. It can’t. You can only get someone off the ventilator or get someone to rehabilitate if you start mobilizing them.
Patrik: I’ve not seen one person come off the ventilator without getting mobilized. Not one.
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Patrik: It makes sense. It’s like saying you want to go for a marathon run and you never train for it. It’s just not happening. It sounds to me like they’ve wasted a lot of time already by not mobilizing your father. That’s what it sounds like to me. Is he depressed?
Ronald: They asked me that. No.
Patrik: You don’t think so,
Ronald: To me, when I’m around him, I feel like he still has some fight left in him, even more than myself.
Patrik: Right, right. How old is your dad?
Ronald: He’s 80.
Patrik: 80. Previously fit and healthy?
Ronald: Yes.
Patrik: Okay, whether he goes into LTAC, or he stays where he is, they need to start mobilizing him, they need to start physical therapy. It’s got nothing… Even if he was on a dialysis machine, they need to mobilize him. From my perspective, it’s not what happens to your dad at the moment clinically. The challenges are there, clearly, nobody can deny that, but it’s about what are they doing with those challenges. It’s so frustrating for you,
and also for me to hear that they’re not proactive, because that’s what it sounds like to me. They’re not proactive in mobilizing him, and it’s very frustrating. Is he getting any physical therapy at all at the moment?
Ronald: No.
Patrik: They’re not even doing arm movements, nothing?
Ronald: Not that I know of.
Patrik: Have they done that at LTAC?
Ronald: No.
Patrik: So, you’re basically saying he’s been in bed for two months, well, longer than that, and nobody’s doing any physical therapy, not even moving his arms or legs, no nothing?
Ronald: No.
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Patrik: It’s terrible. Because I’m conscious of the time, we can spend an hour now, but I feel like we’re not making a lot of progress. I do believe our next step should be for you and me to get on a call with the doctors. What do you think about that?
Ronald: Okay.
Patrik: Because I can ask them questions where we get answers much quicker.
Good answers, much quicker. You can introduce me as a consultant/advocate, but my advice is almost to introduce me as a family friend or as a cousin. Some hospitals feel threatened by bringing a consultant/advocate. You don’t want them to feel threatened, we want to keep it friendly, of course. We want to get answers so I can guide you what to do next. Do you think you can set that up?
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Ronald: I think so.
Patrik: Okay.
Patrik: What time do you think you could talk to a doctor? Is there… Is it as simple as ringing them up and asking them, “Hey, can I talk to a doctor,” or do you need to make a time? What’s your-
Ronald: Usually it is.
Patrik: You ring them up and you talk?
Ronald: Yes.
Patrik: Okay, okay.
Ronald: When I was speaking with the LTAC today, they actually suggested that I get in contact with the doctor today.
Patrik: Okay, great, great. Do you want to do that right now? Do you want to do it tomorrow? What-
Ronald: Yes, I would prefer to do it right now.
Patrik: Okay. Should I call you on the phone and then you can dial in, or we can dial in the hospital?
Ronald: Okay.
Ronald: Just give me a second. I’ll just quickly need to bring up your number.
You think you can get a doctor on the phone now that knows about your dad’s case?
Ronald: I think I can get a doctor on the phone.
Patrik: Do you think that a daytime doctor may have more information?
Ronald: The one that… Oh, it’s 8:00 now. Possibly, but even when I speak with them, I don’t feel like they have any more information. They just go by what’s in the computer, is what I feel.
Patrik: So, you feel like… Okay, I see. What-
Ronald: The doctor wouldn’t even go in to look at my dad’s urine, and she was like not even 25 feet away from his room. I’m standing there talking to her.
Patrik: I see, I see. Well, let’s do this, Ronald let’s finish this Zoom call. I’ll give you a call.
Ronald: Yes, okay.
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Patrik: I’ll call you, and then we can dial the hospital in and see how far it gets us, because I think the more clinical information from his doctor, I think… Or it could even be a senior nurse. If the nurses are experienced, they can give you all the information you need to give a good overview. I will be mainly focusing on ventilation, to ask about kidney failure, ask about blood results, ask about what do they think are the next steps,
and I think go from there. I think that would be… Are you okay with that, if we stop the Zoom call and I’ll call you?
Ronald: Yes.
Patrik: Okay, thank you.
Ronald: Thank you.
