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
Your Questions Answered Live: How to Wean off Ventilation and Tracheostomy in ICU?
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 Mark, as part of my 1:1 consulting and advocacy service! Mark’s dad is with a tracheostomy and on a ventilator. Mark is
asking if Intensive Care at Home can help bring his dad home & wean him off the ventilator.
Can Intensive Care at Home Help Me to Bring My Dad Home & Wean Him Off the Ventilator?
Patrik: Hi Mark! How are you?
Mark: Hi Patrik. Not so good. I feel like I don’t know what to do next with my dad’s condition.
Mark: This journey going on with my dad. It’s so difficult Patrik.
Patrik: I can imagine. Tell me how I can help you with your dad.
Mark: I came across your website and I’m not sure if your company does this where it puts the equipment in place. The certified people to help him in the house. He’s been on a ventilator for about four months and trying to wean off. We’ve been through several long-term care. I
can’t even begin to… No one is better than the other and in and out of hospitals because of little things that have been happening at the long-term. Right now he’s in a hospital because he was bleeding through his tracheostomy and we’ve been telling them for three to four days there’s something wrong. There’s something wrong. And they keep attributing
to the more you suction might just be a little… They ended up changing his trach at the hospital because it was in for more than three months and they usually change it… They said every three months. Now we’d have to find another place for him to go to. This would be the sixth place between hospital and long-term. I guess what I wanted to know is there a way to bring him home, help him to wean off the ventilator but he also does dialysis three days a week.
Patrik: Okay, look, for full disclosure, I am in Melbourne, Australia.
Mark: Okay.
Patrik: We are not providing services in your location yet.
Mark: Okay.
Patrik: There is potentially someone that I can point you towards you can ask a company called Bayada. I will email that to you.
Mark: Okay.
Patrik: They do too what we do here at INTENSIVE CARE AT HOME but only in certain locations, and they are certainly doing some of what we are doing here. If you were here in Melbourne or in Sydney we could take your dad home with ventilation, tracheostomy, and dialysis but it is very, very specialized
what we do.
Mark: Yes.
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Patrik: And the other thing that I know about Bayada, we have successfully referred people to them but bear in mind they’re not specialized. They’re a general nursing agency. They do a little bit of this, a little bit of that. A lot of it will come down to, can they recruit the right people? But even if they can recruit the right people Mark, it’s not… When we do these here it’s not that we say, “We’ve got an inquiry, we’ve got a referral we
will go home next week.” It takes time.
Mark: Right.
Patrik: It’s not so much the equipment. We’ve set up so many homes with the “mini ICU.” It’s more like finding the right staff that’s probably your biggest job.
Mark: Right. That’s the thing because I’ve asked around here with the dialysis can he do it from home. And everybody says no, no, no, no.
Patrik: That’s because they haven’t done it that’s why. They haven’t done it.
Patrik: I believe that in your current location, it is more likely that you’ll find a service provider. What we can certainly help you with is, if you do find a service provider and they would like training, we can definitely offer that even online. We are remote businesses at the end of the day but it will come down to a provider finding critical care trained nurses.
Mark: Right.
Patrik: If I may ask Mark, why several places within four months? That sounds crazy to me.
Mark: He started in a hospital where he has not been well just the whole thing. His muscles have deteriorated. He developed a high amount of CO2 in his blood couldn’t breathe that’s why they had to put him on the ventilator. From there they transferred my dad to another hospital.
Mark: Because he was going to wean off the ventilator. After two, three weeks there, we pulled him out of there and brought him to another long-term hospital. From there he weaned off for two weeks then started getting again the high CO2, put him back on but they couldn’t do anything for him. They just kept going about their daily routine. So we said, “There’s got to be something. We need to see…” Because at that time they said his diaphragm
was not working. One side of his diaphragm.
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Mark: We said maybe we need more testing so then we took him to the third hospital where a rheumatologist worked with him. Testing, more testing, testing and is treating him now with some steroids because it’s almost like he probably had a virus or infection that came and attacked his muscles and left because they can’t find anything now. From there then because they can’t keep you if you’re just weaning off the ventilator. From there they
suggested long-term specialty hospital.
Patrik: Okay.
Mark: It’s another long term…. Supposed to be specialty in weaning. While he was there for two and a half weeks and he started out being able to breathe on his own for 10 hours, eight hours, six hours all of a sudden this blood appeared in the trach and he couldn’t breathe anymore on his own. And we kept telling them and they kept saying it’s his anxiety, it’s this… We’re like just don’t assume we want to know for sure. If everything
physically is okay with him then yes, then he is anxious. Didn’t listen to us until I got the call Wednesday from the hospital said they’re sending him to the ER. I got there and they’re suctioning and just blood and blood and blood coming out. Luckily I don’t know if it was the old trach because they put a new one and then last night the bleeding had stopped but now they’re already… The social worker already starts calling you. “We’re sending him back.” I’m like, “No. We don’t want him to go
back there.” And I’m trying to find places.
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Patrik: Is she on blood thinners?
Mark: Yes. He was on Eliquis but they stopped there.
Patrik: Good.
Mark: When the bleeding started.
Patrik: What was the initial reason for your dad going into ICU? COVID?
Mark: No. He just was… When we took him the first time, he was just probably really close to death that seemed like. Nothing, no eating, no moving and he’s so much better though now. After they gave him the steroids, he was so much better. He was able to put his glasses on, hold the phone. We basically need to get him off this ventilator and then he could just do his dialysis.
Patrik: How old is your dad?
Mark: 74.
Patrik: Okay. When you and your family gave consent to a trach, did you have any idea at the time that the next step would most likely be LTACH? Did you have any
idea at the time?
Mark: No.
Patrik: That’s the missing link for most families-
Mark: Right.
Patrik: They have no idea that when they consent to a trach about the next steps.
Mark: Because they had to. When he had that CO2 during dialysis, he just started…. Can’t breathe. They tried to do I guess that mask or something and he wasn’t responding. So then they put the tube in through his mouth and he had been on for about 12 days and then they said, “We have to put the trach in because you can’t keep that in for more than two weeks.”
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Patrik: Yeah.
Mark: That’s what they did and it’s just been a disaster ever since.
Patrik: And with the facilities that he’s been to, are you allowed to visit or are there COVID restrictions?
Mark: In the beginning, no. Now we are… The last place he was at was two hours. And now he’s at the hospital which is 9:00 to 8:00 so that’s good but it’s more the long-term hospitals that have less of a timeframe.
Patrik: Mark, I really wish I could do more there it’s-
Mark: I wasn’t sure.
Patrik: I’m having those conversations almost every day with inquiries we were going there but we’re just not there yet.
Mark: Okay.
Patrik: We’re just not there yet. We are so busy here but because you’ve got a big number of population there, and we have about 25 million here. I mean the market here is big but it’s…
Mark: Right.
Patrik: We know that people need this and not many people have the skill to pull it off. And it’s difficult for you to find someone. Let me ask you this. How far away do you think your father is from weaning off that ventilator? How close do you think? How realistic is it?
Mark: Some days I think it’s going to be a week and then when he goes backwards it’s like we’re never going to get off of this. I don’t know. He has his ups and downs.
Patrik: Do you think he’s psychologically dependent on the ventilator?
Mark: I think so. I think it’s gotten to that point too.
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Patrik: Is he getting mobilized? Is he getting out of bed every day?
Mark: They tried a little bit. Sitting around the edge and having him stand but that’s about it.
Patrik: Are they doing this regularly?
Mark: They seem like they were in the beginning and then they would skip a day or… It’s hard to say we’re not there. We’re not even supposed to be there that long.
Patrik: In a nutshell, he needs to get mobilized every single day. Every single day. It’s like you can’t… I have not seen someone being weaned off the ventilator successfully if they’re not being mobilized. I just haven’t seen it.
Mark: And that’s what we keep telling them he needs to move around a little more and he even wants to move around. Go sit in a chair or they have him sit in a chair but I don’t know why I just feel these long-term hospitals are just… Their hands are tied. They’re so limited.
Patrik: It’s the better version. The LTACH are a better version of a nursing home. That’s what it is.
Mark: Yeah.
Patrik: You’re going from ICU to a better version of a nursing home. That in my mind it’s almost a criminal act in mind.
Mark: Right. And then I was thinking because… If my mom could be there, stay there with him there are these nursing homes with the rehab. Can he go there and my mom stay there with him? Trying to find one.
Patrik: My experience is that if he’s going to a nursing home/rehab it’ll probably be worse.
Mark: Worse. Okay.
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Patrik: It’d be worse. The other question is how much time has he had off the ventilator? Can he tolerate 10 minutes off the ventilator with a trach collar?
Mark: Yes. He used to be out for two weeks and then-
Patrik: At the moment…
Mark: At the moment… Before the blood in the trach he was doing like 10 hours, eight hours, six hours.
Patrik: There’s something there. There’s something there. How often do they suction him? Do you know?
Mark: There were trying not to do it as much but it was quite a bit.
Patrik: Can he follow instructions?
Mark: Yeah.
Patrik: His brain is working?
Mark: Yes.
Patrik: Okay. Good. That’s a good starting point. Brain is working, mobilization. If the frequency of the suction is reduced, if he can cough, if they can downsize his trach now to-
Mark: He’s still on a six.
Patrik: That’s small.
Mark: The six small?
Patrik: Six is small. Smallest size for an adult.
Mark: Okay.
Patrik: What ventilator settings is he on when he’s on the ventilator? Do you know?
Mark: I don’t know.
Patrik: The other thing is this. Let’s just say your dad is on minimal ventilation support. Okay? Let’s just say someone can take ownership of this and can wean him off the ventilator but you need someone obviously in that facility to take ownership of this and it sounds to me like it hasn’t happened and I’m not surprised by it because they just simply don’t know what they’re doing.
Mark: Right.
Patrik: Right? But the reason I’m going there is simply if he can come off the ventilator, taking him home would be so much easier.
Mark: Right. That’s what we’re waiting for but-
Patrik: Of course.
Mark: Trying to find the next place for him because we were not… We took him out of the hospital. We took him out of the rehab hospital, long-term specialty hospital and we just don’t have many other choices.
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Patrik: It’s terrible. Mark, what I can do for you is simply… If you wanted me to get on a call with you and another call with you and with a doctor, with a nurse whatever. With a respiratory therapist to find out where he’s really at. To ask some succinct clinical questions to find out how realistic is this for your dad to get off the ventilator in the next few weeks because you will change what you’re trying to organize to get him
home.
Mark: Okay.
Patrik: Right? Even going home with the trach is still fairly complex but it’s still much easier than going home with a trach and a ventilator.
Mark: Ventilator. Right. And dialysis.
Patrik: And you’ve got the dialysis.
Mark: Right. That’s the thing.
Patrik: What is he doing with dialysis? Is it a peritoneal dialysis?
Mark: They’re doing it in the hospitals.
Patrik: What catheter does he have? Does he have a catheter?
Mark: He has the one here. They didn’t put a permanent one yet.
Patrik: Got it.
Mark: Because he’s been doing dialysis for about six months.
Patrik: Also this is reasonably new?
Mark: Yes.
Patrik: Right. And that happened in ICU more or less?
Mark: It happened… No before that. He was building up with fluid and not feeling well and having to go back in and out of the hospitals and he fought the dialysis and finally the doctor’s like, “You’re filled with fluid. We have to do it now.”
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Patrik: Right. Is that because of… Is he in heart failure? Is his heart weak?
Mark: He has congestive heart failure.
Patrik: And kidney failure now?
Mark: Right.
Patrik: Right. And when you saying they’re doing it in the hospital every second day or every-
Mark: Yes. Three days a week.
Patrik: Three days a week. And that’s enough to-
Mark: Seems like that.
Patrik: But could be another… If he’s in kidney failure and they’re not managing the fluid balance well. If he’s becoming too positive, fluid balance positive and he has too many fluids on his lungs it could also be an obstacle getting off the ventilator.
Mark: Right.
Patrik: Heart failure is also an obstacle to coming off the ventilator. Is he on a fluid restriction?
Mark: They’re giving him food though through the tube and then I think he has… It must be on a restriction but I think he still has fluid that comes through.
Patrik: He would have fluid but probably with kidney failure as well as with trying to be wean someone off the ventilator I wouldn’t be surprised if they limit fluid intake to a liter a day, a liter and a half a day.
Mark: Right.
Patrik: That’s often what happens.
Mark: Because they’re taking about two liters plus off of him each time and he’s a tiny person.
Patrik: Right. I see.
Mark: You can’t even tell.
Patrik: Sure. This is what I can do. I would be very happy to get on a call with you.
Mark: Okay.
Patrik: To the doctors whoever you talk to at this place to get a better understanding of how realistic is it to get your dad off that. What ventilator settings is he on for example. Have you heard of arterial blood gases?
Mark: I have. I’m not sure really what-
Patrik: Right. When someone is on a ventilator you want to do some arterial blood gases here and there that that’ll gauge the effectiveness of ventilation. And if you ask those clinical questions it’ll also give me an understanding, do they know what they’re talking about? And unfortunately most of the time…
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Mark: The respiratory therapist you’re talking about?
Patrik: Yeah. Respiratory therapist but also the doctors, the nurses whoever is involved in your father’s care should have an understanding about how to wean someone off a ventilator.
Mark: Right.
Patrik: And that’s a skill.
Mark: Right. I know that then I’m finding especially in the LTACH. They’re just there to get a paycheck.
Patrik: It’s not happening.
Mark: No.
Patrik: I’m so sorry to hear when… I can’t tell you how many of those conversations I’m having. Families have no idea that yes, trach is often inevitable but families still need to understand what are the next steps. And they need to understand that they need to maximize their time in ICU if possible because there’s just more expertise available.
Mark: And that’s the thing. He’s in ICU now at the hospital but they don’t want to keep them.
Patrik: Of course not. They don’t have the space.
Mark: But he’s covered by his insurance.
Mark: If we talk to his insurance that because he’s in and out of the hospital can he stay and wean in a hospital because he has other issues. It’s like will they allow it? Will they pay for it? Will the hospital allow it? I don’t know.
Patrik: But the short answer to that question is if you don’t ask you don’t get that’s for sure.
Mark: Right.
Patrik: We have been involved in so many advocacy cases where we try to advocate for families to stay in ICU for longer. Sometimes that works. Sometimes it doesn’t work. Sometimes it is the case of health insurance saying your time is up.
Mark: Right.
Patrik: But again I believe that’s where I can help. I’ve worked in ICU for 20 years looking at what are they doing? What are they not doing? Would another week in ICU help your dad to get off the ventilator and avoid LTACH? You’ve seen LTACH now. You have seen LTACH.
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Mark: Right. And that’s what I was thinking when he started at this hospital. It’s one of the top in our location for pulmonary. I’m thinking had he stayed a little longer could he have done better there?
Patrik: Yep. Absolutely. And those are the questions… Mark what I’ll do is I’ll send you an email.
Mark: Okay.
Patrik: Backed with information about a link to the Bayada website. I’ll send you some information about what options that I have available going forward if you wanted me to talk to the doctors especially while he’s in ICU. We will get much more information in ICU than you will get at LTAC. Once you seen it… You’ve seen it.
Mark: Yeah.
Patrik: The expertise there is so low.
Mark: And then sometimes you can’t even understand what they’re saying to me honestly. The communication was horrible that’s why we got him out of there.
Patrik: Right. It’s terrible.
Mark: Yeah.
Patrik: All right. Mark I’ll send you the email-
Mark: I appreciate the information.
Patrik: Pleasure.
Mark: Thank you very much.
Patrik: Thank you. Bye bye.
Mark: Bye. Bye.
The 1:1 consulting session will continue in next week’s episode.
