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
How Can My Mom Get Off the Ventilator in ICU & Avoid Tracheostomy?
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, Lloyd, as part of my 1:1 consulting and advocacy service! Lloyd’s mom is in the ICU, and he is asking for the right questions so his mom can get the best care and treatment in ICU.
What Are the Right Questions to Ask So My Mom Can Get the Best Care & Treatment in ICU?
“You can also check out previous 1:1 consulting and advocacy sessions with me and Lloyd here.”
Patrik: Yeah. Do they suction her regularly?
Lloyd: Yeah, they try. I mean, they do sometimes I have to call them to get suction and I think right now she probably needs to get suctioned.
Patrik: Right. And when they suction her, she’s coughing?
Lloyd: Yeah.
Patrik: Okay.
Lloyd: She doesn’t like it, she’ll cough.
Patrik: Yeah, sure.
Lloyd: And that’s what happened last night. They said that she was really good. I mean she has a strong cough. But the nurse said she doesn’t have a strong cough.
Patrik: Right. Okay.
Lloyd: She’ll try to cough it up into the end, but she has the tube, so it’s hard to cough it up.
Patrik: And with the daily chest x-rays, have they commented on the chest x-rays that there’s issues?
Lloyd: Today is the first day that there was some sort of issue, they found some opacity and what’s the word, Belle or Paul?
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Patrik: Opacity?
Lloyd: It could either, yeah, opacity, but it was artero… something. I could look it up right now. And then they said it could also signify pneumonia. They don’t know which the doctor came before he said, or it could be partial collapse of the lung, I guess.
Patrik: Right. Okay. Yep.
Lloyd: But he didn’t, they weren’t here, so not sure where it was.
Patrik: Right. Okay. That wouldn’t be good because a pneumonia could set her back and that would delay most likely extubation. You see, the problem is that the longer someone stays on a ventilator, the higher chances they end up with what’s considered a ventilator-associated pneumonia.
Lloyd: That’s the thing. We have to find the fine balance.
Patrik: Right. Mobilization is key, sitting up.
Lloyd: Yeah.
Patrik: Absolute critical.
Lloyd: And I’ve been asking them to do-
Paul: How would we stress that to them for her to get any sort of movement done?
Patrik: Yeah.
Lloyd: Because right now they’re not doing anything for her.
Patrik: Yeah, yeah. Well,
Lloyd: Despite the fact that I’ve asked.
Patrik: Simple as asking and as simple as asking them why can’t they start with physical therapy? There should be nothing stopping them from giving her physical therapy, moving arms, moving legs. The longer someone is immobile, the higher at risk of pressure sores, joints contracting. It’s just people start to decondition very, very quickly.
Lloyd: And is it worth for us to reach out to the hospital social worker, or what is it called? Patient advocate?
Patrik: Yeah, you could, you could. I mean, as I said, the missing link to me is, I mean, is again, why is she not waking up? That’s the missing link for me. If you can get an answer, there. I can’t see that they haven’t done anything wrong at the moment. What worries me obviously is the push for a trach and the push for a PEG whereas the question should be, “Well, what are they doing to avoid that trach?” That should be the question, rather than, “When are we doing the trach?” Big difference.
Lloyd: Yeah. Yeah. Okay.
Patrik: And there’s certain-
Belle: Are they going to use the pneumonia as the excuse for the trach?
Patrik: Potentially. Yeah, potentially, yeah. Or I wouldn’t say use the pneumonia as an excuse for the trach, but use the pneumonia as an excuse for keeping her intubated and then come back with the trach in a few days. Definitely.
Lloyd: Okay. All right, that helps.
Belle: Did we lose our leverage then at that point in a few more days and she’s just coming off pneumonia that we can’t wait any longer attempt to extubate?
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Patrik: Yeah. You see the problem with the two-week mark is this, with the 14-day mark is, if you keep someone intubated for longer than two weeks, there are side effects such as you could damage vocal cords, you could damage the windpipe. There’s definitely significance there. And I can understand why they would then want to go for the tracheostomy. I guess the challenge is to know your options as well. And the option is, yes, you could give consent to a trach at the two-week mark. Do not give consent to a PEG tube. So at least she won’t go to LTAC. At least she needs to stay there, which I believe is the safer option. But yeah, now that we, again, we’ve established two things now. Why is she not awake? And is the talk about pneumonia, is it just talk or is it real?
Lloyd: Okay.
Patrik: And if she does have pneumonia, I hear she’s been started on antibiotics already, how are they dealing with it?
Lloyd: Yeah, okay. But if she’s already on antibiotics, then that should be taken care of-
Patrik: Not necessarily. What they should be doing is they should be sending a sputum sample, isolate the bacteria, and then … Or grow the bacteria and then give the appropriate antibiotic for that.
Lloyd: Oh, okay.
Belle: I think they’ve done that.
Lloyd: Right.
Patrik: Okay. Great. Thank you. That’s good. I hope that helps to put things in perspective and ask the right questions when you talk to them. But the question really is, what are they doing beyond the shadow of a doubt to avoid that trach?
Lloyd: Yeah. Okay, so that’s the question.
Patrik: That’s the question.
Lloyd: Okay.
Belle: I was just going to ask how we get more communication going with the doctor because they don’t want to talk to us.
Patrik: That’s terrible.
Belle: Even though there are two people in the room 24 hours a day, two relatives are in there constantly. Everything is an emergency and we find out about it randomly or at the last minute. It just doesn’t make any sense to me that they don’t give us a heads up. I mean, it’s referring to care necessarily, but it’s just irritating to us.
Patrik: Of course.
Belle: Making it way more stressful for us.
Patrik: Of course. And are you saying you do have a meeting with them this afternoon?
Lloyd: Yes. We’re going to try to get one together.
Patrik: Right. Is that you initiating that or them initiating?
Lloyd: No, me.
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Patrik: Right. And are you saying that in all this time you haven’t had a formal meeting?
Lloyd: No.
Belle: Only when the emergency for the extubation. They called and said, “We’re taking the tube out.” And that was, the extubation was an emergency, they gave 10 minutes notice. They came in and said, “We’re doing it right now.”
Patrik: Right. Then to answer your question from earlier, should you be liaising with patient advocate? I would say yes, because I do believe you need to get regular updates, for sure. That’s not appropriate.
Belle: Yeah, I think they give you portal access and they kind of then … But they don’t explain the results.
Patrik: Yeah, yeah, of course.
Belle: I have to look up these medical terms to figure out what’s going on.
Patrik: Yeah, no, I get that. That’s terrible. And you know, you got-
Lloyd: I’ll try to-
Patrik: You got to look at it from their end as well. Once, God forbid, she’s got a trach and potentially a PEG and they send her out. It’s kind of out of sight, out of mind. Whereas you have, by you not giving consent to the PEG, you have ultimate control. But don’t tell them that. Just tell them you don’t want to do a PEG. That’s all.
Belle: Okay.
Lloyd: And then also a stroke doctor, like a follow-up doctor we have to find, that would be another neurologist that we would have-
Patrik: Yes. Look, I really hope, I mean, you were telling me she was awake last week. I hope that she will be awake very soon again, because the more awake she is that I believe the easier her recovery. But you definitely need neurology input at this stage, for sure.
Lloyd: Okay. Okay, we’ll do that. And then we’ll reach out. I know it’s over our mark. We kept asking this after, but we’ll reach out I guess if we need to schedule more time.
Patrik: Yeah, anytime. I would also be very happy to talk to them directly if you wanted that.
Lloyd: Oh, okay.
Patrik: That’s up to you. I can do that. We can also look at medical records. There’s a whole range of things we can do.
Lloyd: Okay, all right, that will be great. I guess we’ll see how today goes-
Patrik: Of course.
Lloyd: … and then I guess then we can reach back out and see, like I said.
Patrik: Of course-
Lloyd: There’s something where we need you to step in, we’ll just reach out.
Patrik: Of course.
Lloyd: Paul, Belle, you have any other questions before we let Patrik go?
Belle: No, I think that’s good. Yeah, I think we’re going to definitely bring back what we find. I think we need to schedule another meeting just to go over the results we have today.
Patrik: Sure, sure.
Belle: What kind of lead time do we need to do that?
Patrik: Just reach out to me.
Belle: Okay.
Lloyd: All right. Perfect. All right, well thank you so much. We appreciate all you do, and hopefully everything will turn okay.
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Patrik: Absolutely.
Lloyd: Yes, thank you again.
Belle: It’s great to be able to talk.
Paul: Thank you.
Patrik: It’s a great pleasure. All the best for now.
Paul: All right, take care.
Patrik: Bye-Bye. Bye.
The 1:1 consulting session will continue in next week’s episode.
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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
- 5 mind blowing tips & strategies helping you to get on the right path to making informed decisions, get PEACE OF MIND, control, power and influence in your situation
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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!
Make sure you also check out our “blog” section for more tips and strategies or send me an email to [email protected] with your questions!
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This is Patrik Hutzel from INTENSIVECAREHOTLINE.COM and I’ll see you again next week with another update!