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
My Mom with Leg infection Only But How Come She is Ventilated Now in ICU and Cannot Be Weaned?
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 Tara, as part of my 1:1 consulting and
advocacy service! Tara’s mother has a tracheostomy in place and is currently admitted in LTAC. What is the difference between ICU and LTAC?
My Mom Has a Tracheostomy and is Currently Admitted in LTAC. Should My Mom Have Stayed in ICU Rather Than Going to LTAC?
Patrik: Okay. Because if they do, that would be prohibitive of taking her home.
Because that’s why I’m asking, if they do give her blood pressure medication it’s considered life support and that would be prohibitive to take her home at this point in time.
Tara: Would be perfectly, what?
Patrik: It wouldn’t be doable to take her home.
Tara: Doable?
Patrik: Yes.
Tara: Oh. Because of blood pressure medication?
Patrik: Yes, absolutely. Intravenous blood pressure medication. Going through a drip. That’s what I’m trying to find out.
Tara: No, no, she doesn’t have any.
Patrik: Okay.
Tara: She has a stomach bag though.
Patrik: Okay, okay. That’s good. That’s good.
Tara: No, nothing. No IV.
Patrik: Okay, okay. But from what you’re telling me, I question that they’ve tried everything to get the CO2 down.
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Tara: Yeah. I don’t know either.
Patrik: I question that they’ve tried that. Are they giving you any timelines in terms of when they wanted to send her to LTAC?
Tara: No. We’re going week by week at the moment, over here.
Patrik: Okay.
Tara: The doctors didn’t say this but the administration said it was more of an insurance thing. That both doctors have to agree that there’s nothing more they can do and that’s when the insurance stops paying.
Patrik: Right, right.
Tara: I don’t know whether you can stay there but not pay cash but it wasn’t suggested.
Patrik: I’ll tell you what we have done. And now I also understand, you came to us through our website Intensive Care at Home. Is that correct?
Tara: To go home. Yeah.
Patrik: Right, because we have another website. Sorry, I didn’t get that in the beginning. We have another website, Intensive Care Hotline. Basically, what we do there is we provide a consulting and advocacy service for family.
Tara: Okay. Right I saw that on the website.
Patrik: Right, right.
Tara: So that’s fine too.
Patrik: Right. So, what I can see in this situation is… I’m glad that they’re not putting you under pressure in terms of saying, “yup she got a tracheostomy now and now she needs to go to LTAC in the next three days”, because that’s what often happens. We have some clients, they come to us and
say, they want to do a tracheostomy on my mom tomorrow, and then they want to send her out to LTAC the day after. Right? So on the one hand, I am very pleased to hear that you’re not under immediate pressure there.
Tara: Well, I’m sure that’s just because insurance.
Patrik: Look it can also be insurance but it can also be bed space. Lack of beds in ICU.
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Tara: Oh really?
Patrik: Right. So they are pushed for beds. So, that could be another reason but I’m glad to hear that you’re not… That they’re not telling you, oh, we need to send you out tomorrow, that gives you time.
Tara: Okay. Good. Yeah.
Patrik: Good.
Tara: They’re still.
Patrik: That’s good. When you’re saying insurance, is there an issue with the insurance now? Doesn’t sound like it?
Tara: No, not now. Right. But I’m saying if the doctors said that they don’t think there’s anything more that can be done for her, I would think that’s when the insurance changes. The Medical Aid Society say you have so many days and you have to leave, so.
Patrik: Yeah. Okay, okay.
Tara: Yeah.
Patrik: So, there’s a number of things that they could do even without ECMO ,that would be number one. The first thing that I would like to know is how are they ventilating her? Right.
Tara: You mean the settings?
Patrik: Yeah, the settings, would be very helpful to get them.
Tara: Okay. Okay.
Patrik: Right. That would be number one. Number two, what’s their plan? It doesn’t sound like they have a plan.
Tara: No they’re getting it… Like I said, the respiratory therapist and pulmonologist are saying they’ve given up weaning. That she’s unweanable, so that’s the one doctor. Then the other doctor is currently giving her another kind of medication to try to wake her up.
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Patrik: Okay.
Tara: And as of today, he was supposed to increase the dosage, to see. She was starting to come around, a little bit, but we’re talking moments.
Patrik: Do you know what the-.
Tara: What the medication is?
Patrik: Yes.
Tara: Not offhand, no.
Patrik: That’s okay.
Tara: He said it was an old Parkinson’s drug.
Patrik: Right, right. How bad was the Parkinson’s?
Tara: Slow.
Patrik: Oh. Did she need full-time care? How bad was the Parkinson’s at home?
Tara: Yeah, she wasn’t great. She had a lot of muscle stiffness.
Patrik: Right.
Tara: She was able to walk still. We had home healthcare, twenty four hours or twelve hours and then I was the other twelve because I live with her. So we help her get in and out of the bathroom but she could eat or speak clean herself. There was quality of life. She’s still enjoying watching TV and talking to people. Her mental status was actually… I wouldn’t say a hundred percent because she’s seventy-eight, she had Parkinson’s and normal
decline so. She’s wasn’t like a spring chicken mentally but she was still pretty with it. If you didn’t know or typically if you talked to her on the phone, you probably wouldn’t know that she even had Parkinson’s.
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Patrik: Right, right.
Tara: If you saw her in person you could tell but-
Patrik: Right, okay.
Tara: If you talked to her on the phone, you would just say this is just an older lady that has problems getting all the words, all the time but not bad.
Patrik: I see. And sorry, you said that she’s seventy-eight? I understood seventy in the beginning.
Tara: I’m sorry, I didn’t catch all of that. She’s seventy-eight. Correct.
Patrik: Seventy-eight?
Tara: Right.
Patrik: All right. I understood in the beginning, I thought was seventy. But nevertheless, doesn’t matter. There are patients who come off the ventilator in their eighties. And as I said, she is still in the right environment. What do I mean by that? The minute she leaves ICU
that’s when things get really bad because LTAC, at the end of the day, as you said in the beginning, they’re a better version of a nursing home.
Tara: Right. Right.
Patrik: The only place somebody can be safely weaned off the ventilator is intensive care while you’re still having all the skills like intensive care nurses, intensive care doctors, pulmonologists, respiratory physicians and so forth.
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Tara: Well, yeah. That was part of the issue. They put the breathing tube in and then she was scheduled for the tracheostomy in three or four days. And they came to me, the palliative care, they were trying to talk us out of having the
surgery and just letting her die on the table or whatever. I don’t know what they thought probably. But because they said, “Do you really want to put your mother through all this…” and all this stuff?.
So at some point we decided, because they kept saying she would never get off the ventilator. So we said before she goes and has a tracheostomy, let’s see if she can get off the ventilator and so they did it. So they delayed the surgery and they said, that whole week, because that would buy them more time and it didn’t take that long to get her off the ventilator. It took like a day or two and they said she had reached the settings required, she could be off the
ventilator. So that’s why we said, well let’s go ahead and do the tracheostomy then. I don’t know that it’s a little more difficult but still she proved that she could get off the ventilator to begin with.
Patrik: Right. How many days after she first got ventilated with a breathing tube, how many days after was the tracheostomy done?
Tara: So, it was the middle of the week and then Tuesday of the following week.
So almost a week because they didn’t want to do it over the weekend. So it was Tuesday of the following week so it was Wednesday or Thursday when we said she was able to come off. So it was five, six days.
Patrik: That’s too early. I don’t know how much research you’ve done. For example, I worked in the intensive care for twenty years. The tracheostomy has its time and it’s place, there’s no question about that but it shouldn’t be done before ten to fourteen days. I’d say fourteen days. The reason is you want to show beyond the shadow of a doubt.
Tara: Ten to fourteen days, what?
Patrik: Fourteen days. You should wait fourteen days before you do a tracheostomy.
Tara: From when she was first intubated?
Patrik: Very much so. Very much so.
Tara: Okay. Well, then that makes sense, it probably was about that.
Patrik: Right.
Tara: Because like I said, she was intubated and then they had scheduled the first surgery. But it all got delayed so it probably was closer to two weeks when she finally got the surgery.
Patrik: Right, right.
Tara: Ten to fourteen days, yeah.
Patrik: Okay, okay. Because you only want to do a tracheostomy once you’ve proven beyond the shadow of a doubt that you can’t be weaned of the ventilator now.
Tara: Yeah, but she proved she could be. But they were just saying that they had to do it because of the secretions.
Patrik: Yeah. Look again. You know the biggest challenge in a situation like this is that you don’t know what you don’t know.
Tara: Right.
Patrik: That’s the biggest challenge for families in a situation like that and in order to get to the bottom of things, the next step really is to ask some questions. Right.
That’s number one. Ask some questions and number two get picture of the ventilator. That’s the next thing.
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Tara: Right.
Patrik: I strongly argue that even with the high CO2 and with everything that you shared with me. I still believe she needs to get out of bed every day. I strongly feel that way. Your breathing muscles will not strengthen in bed.
Tara: But how do you get somebody out that’s not awake?
Patrik: I tell you that it’s doable. If they’re not doing it, I argue they’re lazy.
Tara: They could do it with the lift and put her in a chair. They did that a couple of times.
Patrik: Yeah, absolutely. Well, that’s what they need to do.
Tara: Yeah. Great but I don’t understand why you think a chair is a whole lot different than the bed.
Patrik: Oh, it is. It is. Imagine you’re sitting up as opposed to lying down all the time. It makes a world of a difference. How can you get… Picture this Tara, you’re lying in bed twenty-four hours a day. And she’s been in bed now for six weeks?
Tara: Right.
Patrik: So imagine your brain gets stimulated just by moving.
Tara: True.
Patrik: Right, I’m so disappointed every time I’m working with clients like yourself and so disappointed to hear that ICU’s are not doing that. It’s bread and butter.
Tara: Okay.
Patrik: It’s bread and butter for ICU. As I said, I worked in the environment for twenty years, I’ve seen the difference that it makes when patients get out of bed.
You think they’re asleep and they’re not waking up but that’s exactly when you need to do it.
Tara: I agree. Just keep them stimulated. That makes sense.
Patrik: That’s exactly when you need to do it.
Tara: Right. Okay.
Patrik: Going forward again, how I can help you is really prompting you, prompting the team there to what they might need to change. We can do that directly. You and I can get on the phone to the doctors, that would be one way to go about it, or I could set you up with some questions. I can also participate in any meetings over the phone you have with the doctors.
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Tara: Okay.
Patrik: Right. That is part of the service that we are providing.
Tara: Okay. Okay. And can you give me some options with regards to your services?
Patrik: I’ll give you some options. I’ve got several options.
Tara: Okay.
Patrik: For example, I have a two week option that gives you two weeks, twenty-four hours unlimited access to me over the phone. It includes, obviously, talking to the doctors, nurses if you have any meetings with them, I’ll be there over the phone. You don’t have to use the two weeks, fourteen days in a row, you use it at your own pace. You can spread it out over whichever period you like. I also have a seven day option. The seven day option,
again same rules apply, you have seven days, twenty-four hours unlimited access to me. Includes talking to the doctors and nurses. It includes participating in any family meetings you might have. The seven day option again, you don’t use it seven days in a row, you can use it at your own pace.
Tara: Okay.
Patrik: I also have a four day option. Again the same rules apply. Then I have an hour option to begin with. If you choose that to begin with, it can be credited towards all of the other options. So you can start with an hour and then that will be credited towards any of the other options that I mentioned. And I have an online option where you have access to me in a membership, in an online membership also via text and email. If you are a member
you also get a 20% discount for the phone consulting options that I’ve just mentioned, so.
Tara: Okay.
Patrik: If that’s overwhelming, I can email that to you, of course.
Tara: Yeah, I was just going to say is that information accessible on that website? I don’t remember seeing it.
Patrik: No, no, that’s okay. I will email that to you.
Tara: Okay.
Patrik: So that you’ve got that in front of you. Please, also, I do work on a first come, first serve basis.
Tara: Okay.
Patrik: Whoever sort of gets in first, I can help. So, what I’ll do is the next step, I will email you what we just talked about. Are you in the hospital at the moment?
Tara: No. I’m at home. I’ll be going up there later tonight.
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Patrik: Right. And how far away are you from the hospital? Are you far away?
Tara: About an hour and a half.
Patrik: An hour and a half?
Tara: Yeah.
Patrik: Right. Wow. That’s a fair bit.
Tara: Yeah, I know.
Patrik: And that’s the closest hospital you have to your home?
Tara: Well, that’s where we ended up.
Patrik: Right. Okay, okay, okay.
Tara: We wanted to handle it and then the Rutland General Hospital sent her to Criticare that seems like a weaning facility. They’re actually like a critical care to recovery facility.
Patrik: Sure. Sounds good in theory but at the end of the day, it sounds like an LTAC and it’s just got a fancy name. But at the end of the day, it sounds like it’s an LTAC and it sounds like it’s a better version of a nursing home. The main difference between intensive care or critical care and LTAC is really, at the moment you would have seen you’ve got intensive care nurses, intensive care doctors, pulmonologists, you’ve got the respiratory
therapist and so forth. Whereas if you go to LTAC you will see one doctor for thirty patients and there’s no intensive care nurses. And I always say, how can you wean somebody off the ventilator if you are lacking the expertise?
Tara: Yeah, I know.
Patrik: Right. If there’s a chance of weaning your mom off the ventilator, it’s now.
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Tara: You were saying… What was that?
Patrik: I said that if there’s a chance-
Tara: If there is a chance. Yes.
Patrik: To wean your mother off the ventilator it is now. Once she’s going somewhere else, chances will be diminishing. And we’ve helped clients to keep them in ICU through our advocacy.
Tara: No, she’s already gone to this other facility.
Patrik: Oh, she is already?
Tara: Yeah, she’s been there for three weeks.
Patrik: Oh, so she’s left ICU already?
Tara: Yes.
Patrik: I misunderstood that.
Tara: Yeah. I’m sorry, I was probably talking fast. Yeah, she had her tracheostomy and then she was in ICU for about a week after that, and they had trouble getting her off sedation. And then when they got her off sedation, that’s when they recommended sending her over to that other place to get fully
weaned.
Patrik: Okay. And is this within the same hospital? Or is this different?
Tara: No, no, this is a smaller critical care recovery hospital. They call themselves, Criticare.
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Patrik: I see. So you would have already noticed the difference in staff. In the skills, probably from the staff. Would you have noticed?
Tara: Yeah. They tried the same in the beginning but that’s what they specialise in, with weaning and that all their staff was skilled. And I actually don’t doubt the doctor. He did train at Cleveland Clinic. But everybody under him and it’s like a different set of people, every couple of days, so it’s hard to keep up.
Patrik: Right.
Tara: I can’t say that they’re bad at care, but I don’t really know if they’re doing fully what they need to be doing. But they’re doing it under the doctor’s supervision.
The 1:1 consulting session will continue in next week’s episode.
