Dad’s off the ventilator and still has the tracheostomy after 5 weeks in ICU, now they try to send him to a nursing home, how can we stop it?

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 one of my clients and the question in the last episode was

Dad’s off the ventilator after 5 weeks in ICU, now they try and drug him up to avoid seizures, what should we do?

You can check out last weeks question by clicking on the link here.

In this week’s episode of “YOUR QUESTIONS ANSWERED“, I want to continue answering the next questions regarding James’ and Christine’s Dad in ICU who’s had a haemorrhagic stroke.

James’ and Christine’s Dad had a brain decompression where they evacuated a large bleed from his brain after the haemorrhagic stroke. And their Dad also underwent a craniectomy (partial removal of skull) to decrease the brain pressures after the bleed.

James’ and his sister Christine were getting their Dad in one of the best hospitals in the USA, the Cleveland clinic in Ohio.

In the meantime, their Dad was getting a tracheostomy because he couldn’t be weaned off the ventilator and the breathing tube. He also had a PEG tube for feeding inserted.

He also had ongoing seizures due to the stroke and his anti-seizure medications needed to be optimized so he could “wake up” and progress to Neurology Rehabilitation.

In today’s 1:1 consulting and advocacy sessions with James and his sister Christine, we look at some setbacks their Dad is going through.

He had to be put back on the ventilator due to a Pneumonia and he also ended up with a central line (CVC) and arterial line again.

In the meantime he has come off the ventilator but still has the tracheostomy after over 5 weeks in ICU.

This series of 1:1 consulting and advocacy is a real testimony for getting advice, run with it and get results.

If you want to avoid LTAC and a nursing home for your loved one, you need to read all of the consulting and advocacy sessions with James and Christine!

So in today’s episode of “YOUR QUESTIONS ANSWERED”, I answer a series of questions from James and his sister Christine again that are excerpts from various 1:1 phone/email consulting and advocacy session with me and the topic this week as part of this series of 1:1 consulting and advocacy session with me and the topic this week is

Dad’s off the ventilator and still has the tracheostomy after 5 weeks in ICU, now they try to send him to a nursing home, how can we stop it?

You can also read or watch previous episodes of 1:1 consulting and advocacy with James and his sister Christine here

PART 13

PART 14

Patrik: Yeah, yeah. I mean, the good news is, overall, your dad’s off the ventilator for a week. They’re trying to size down the tracheostomy. That’s all good. The new seizure and the new seizure medication: that’s not such good news. So, you know, maybe you can ask them to take one seizure medication off. The new one they added in. They try to be very conservative there, I have the feeling. They’re very conservative. I mean, you don’t want him having seizures, of course. But you do want to have him more awake.

Christine: Mm-hmm (affirmative). I know. Well, well this is very helpful. We’ll have to decide. See, I think with patients, unfortunately my dad seems as though he’s had a little bit more seizures than the average patient. So we have to balance these seizures in which direction we go in. You know what I mean?

Patrik: Yeah, absolutely. Absolutely.

Christine: You know, it’s interesting. This hospital’s been very, very good. But lots of time, these decision makers, not the seizures, but the girl who came in today from the doctor of rehab that said he needed to go to skilled nursing. I’m not taking anything away from these people, but she looked like she was 30 years old.

Patrik: Yeah.

Christine: She doesn’t have a tonne of experience.

Patrik: Yeah, yeah, yeah.

Christine: I know she’s smart, and they’re doctors.

Patrik: Yeah.

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Christine: But I’m looking at this girl, and I’m like, holy … I mean, she’s making a life decision here, and, you know, it’s a short-term nursing home decision. But you don’t know if he’ll get out of it or make any milestones. It’s just been … you know. It’s just … I don’t know.

Patrik: Yeah.

Christine: I don’t know. We’ve got to put it all together and figure out what to do.

Patrik: Yeah. And that is a big problem, especially in Cleveland. It sounds like it’s a teaching hospital. And because it’s a teaching hospital, you would have a lot of junior doctors.

Christine: Right.

Patrik: Because they’re all doing their training there.

Christine: Mm-hmm (affirmative).

Patrik: Right?

Christine: Right.

Patrik: So, it is a big issue that often decision makers don’t have a lot of experience, or they’re making decisions on behalf of a senior doctor who doesn’t want to get involved, really. You know? Who doesn’t want to talk to you. So they all delegate this to the junior doctor, who delivers the message.

Christine: Mm-hmm (affirmative). Well, we have … We’re lucky in the sense in Buffalo, that the hospital-to-hospital transfer is you can go back to the hospital to get the brain surgery. We have contacts there. And the doctor is very good. This is the neurosurgeon, there. However, that hospital scares me in the sense that the everyday daily nursing care, I’m afraid he could get an infection there. Just based on where that hospital is and what I saw.

Patrik: Right.

Christine: So, you know. It’s positive in the sense that we could get him in. We know that neurosurgeon, and we really do like that neurosurgeon.

Patrik: Yep. Yep.

Christine: He’s very close to my brother, and he’s really been spot on with everything my dad’s saying.

Patrik: Right.

Christine: So we have that option, and he’ll probably have to try to call some people to do a hospital-to-hospital. Or, the second option is the one, it’s smaller kind of Catholic hospital where this other neurosurgeon sort of pretty much runs that hospital. He’s very involved there. He’s more of a back surgeon, but he’s a neurosurgeon, and he knew my dad quite well.

Patrik: Right.

Christine: That hospital, he may not get as many potential infections, but the doctor I don’t know is as strong as the other doctor at the hospital where my dad could get infections. So that’s why we’re torn. You know what I’m saying?

Patrik: Right, right. Absolutely, absolutely. It’s tricky, you know. I think getting him closer to home, on the one hand, would help him. But on the other hand, if he could get onto a good neuro-rehab in Chicago, you know, that may be something to be considered as well. It’s a difficult decision, for sure.

Christine: Right. Well, we’ll have to see. Look, I’ll talk to my brother. I think we have some time here. They don’t have a meeting just yet.

Patrik: Right.

Christine: But I agree with you. I think the skilled nursing home is a disaster.

Patrik: It’s a disaster. Disaster. And maybe find out from the insurance what they are prepared to fund, and what they are. Because that could be where the real issue is.

Christine: They really only give you three weeks there. I mean, that’s it.

Patrik: In-

Christine: You get three weeks with an in-patient here with the insurance, and then after that it’s out-patient. You’ve got to get a hotel and go out-patient.

Patrik: Right.

Christine: I mean, if he’s not ready physically, for out-patient and to be in a hotel. I mean, where does that leave you?

Patrik: That leaves you with-

Christine: That’s actually a really good point. I mean … yeah.

Patrik: I think that the insurance could be driving a lot of the things that’s going on in the background that they haven’t sort of shared with you.

Christine: Yeah. And then, you know, what happens is if he’s not ready for out-patient after he does the release of in-patient, they send him to a nursing home.

Patrik: Yeah, exactly. Exactly.

Christine: Because his wife doesn’t want to bring him home like that.

Patrik: Right.

Christine: So then he’s really stuck in a nursing home.

Patrik: And that’s why I believe it comes back to, you know, trying to send him to neuro-rehab where they, you know, can really work on his cognition, on his movement. And it could well be that even the neuro-rehab might have some admission criteria, and that he simply may not qualify for that just yet. However, you need to hear that. You need to know whether he is or he isn’t qualifying for that.

Christine: Right.

Patrik: They have-

Christine: If we rush him off to three weeks of neuro-rehab next week, and he gets there and he doesn’t make the milestones and he’s not ready for out-patient, he’s back in a nursing home.

Patrik: Yeah, exactly.

Christine: So maybe we’re better off doing the hospital-to-hospital, strengthening him up, so we have a clear path of both in-patient and out-patient.

Patrik: Yeah, that’s … yeah. But you know, the problem is, from what I can see, there is no guidance from the hospital, is there? They’re all keeping you in the dark, really.

Christine: I think it’s a liability thing, honestly. We sat with the social worker, very nice lady. But they send people to facilities very close to Cleveland here. You know?

Patrik: Yeah.

Christine: They’re not going … I asked her if she knew of this LTAC in Chicago. Never even heard of it. And she’s the social worker on the brain-neuro ward. So I was shocked she’d never heard of this.

Patrik: Yeah, yeah.

Christine: So.

Patrik: I think the way forward, from what I can see, you’ve got to keep asking those questions around, you know, neuro-rehab. But also ask those question around bringing him home for a while and see what their response is. That would be my-

Christine: Right.

James: Patrik, let me ask you a question. In your opinion, and I know that you’re not a neurologist, but like Christine said, if he’s at the point right now where he’s on seizure medication, his cognition isn’t good at the moment, you know. Isn’t the firs step to just basically get him up in a chair and mobilise him, do some speech therapy, do some swallowing, make sure he swallows. It’s kind of like, if we rush him off to a neuro-rehab tomorrow or next week, how much is he really going to even get out of it?

Patrik: Yeah, and that’s what I mean.

James: Isn’t there a progression here?

Patrik: There would be. And the neuro-rehab would have some admission criteria to get him in. Right? And I don’t know what that admission criteria is, but he may not meet that criteria at this point. Those are the questions you’ve got to ask. Where does your dad need to be at in order to qualify for the neuro-rehab? But they haven’t even given you an answer to that. Have they?

Christine: You know what, I do have that from the one that gave me the list here from Chicago. Let me see here. He’s got to be able to follow commands, which on the seizure medicine, he’s not really following commands all that well. He’s got to be able to have the mitt off, James. Which … I tried to take it off today, just now, and he wants to go grab his trach out.

Patrik: Right. Right.

Christine: So, I mean. He’s not ready right now, the way I see it. Which means they’re trying to stick him in a nursing home.

Patrik: Yeah, yeah.

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Christine: If somebody doesn’t manage these seizure medicines well, he could be stuck in the nursing … He needs somebody, a doctor that cares to get these seizure medicines right and to get that Seroquel right. Nd then he will be a different person.

Patrik: Yeah. He-

Christine: That’s what I think.

Patrik: Yeah. Somebody needs to get the seizure medication right. Definitely the Seroquel as well. And they need to have a plan besides the nursing home. You know? That, to me, is the missing link. There is no plan besides saying, “Well, if your dad is not improving we sent him to a skilled nursing facility. That’s it.”

Christine: Mm-hmm (affirmative).

James: Patrik, I gotta go. I have to go, guys. Patrik, real quick. Do you happen to know anything like … With some of these hospitals and some of these neuro-rehabs, I’ve called and offered to self-pay. You know, insurance is paying all of this. We’re not rich.

Patrik: Right. Yeah.

James: We’re not rich, but we have enough money to pay for a month if we need to.

Patrik: Yeah.

James: So why don’t … They seem like they really kind of shy away from that.

Patrik: Right.

James: We can’t do that. You can’t take cash?

Patrik: Look, I do believe that one of the biggest problems in hospitals or any healthcare facilities is not so much the getting money in. It’s a matter of, the issue of it is can we deliver? That’s often the issue. Can we deliver? Lack of resources. Lack of resources. And by that, I mean staff-

James: If I say we’ll self-pay, and they don’t deliver, then I could sue them.

Patrik: Well, you could do that. But also, it could be a simple capacity issue. And the reason I’m saying that, you know, I, just very briefly, I have an in-home care nursing service INTENSIVE CARE AT HOME. Right? And my biggest problem there is can I deliver? It’s not do I get clients. That’s not the issue. The issue is can I deliver on the demand. And many other health services have similar issues.

James: Right.

Patrik: So I-

James: Well, even at the Cleveland Clinic here, why couldn’t we just self-pay the hospital? And say, okay, if pay yourself-

Patrik: Probably-

James: … if Medicare won’t pay for it anymore …

Patrik: They’re probably not interested in that. They have enough demand. They’re probably not interested in it.

James: Okay. Jen, do we have any other questions?

Christine: No. I don’t think so Patrik. I think this is very helpful.

Patrik: Get the answers. Try and get the answers. Try and get a plan. They haven’t come up with a plan besides the skilled nursing facility.

Christine: They don’t have … We’re having a hard time. They’re not going to give us a plan. The more we’re talking about this, and we’re up against the craft, the more I talk about this, they’re not going to let us in here to manage my dad’s seizure medicines for the next few weeks.

Patrik: No, no.

Christine: I just don’t see it happening, based on these conversations. So, if we can get him to a hospital in Buffalo, and again we may have to battle the insurance, but if we know somebody … I hate to say it, but if we know someone, they can start writing in medical mastectomy or whatever. Or do what they can to keep my dad there long enough to get the seizure medicines under control. I don’t know. To me, it seems like if we rush him off to some neuro-rehab and he’s on all this seizure medicine, he can’t follow commands. And we get there and everything and they say, “Sorry, we can’t do this.” He’s going to end up in a nursing home and we’re going to miss the opportunity of a hospital-to-hospital transfer.

Patrik: Yes. Yes.

James: It’s just a fact that he needs to have his mittens off. That’s enough to tell you that he can’t go anywhere except to Kenmore Mercy, Christine, because like you said, the minute you take his mittens off, he tries to rip the tracheostomy out of his throat. And that’s never going to end until the tracheostomy out of his throat.

Christine: Yeah.

Patrik: Yeah, yeah.

James: So, I mean, we have to take one step at a time here.

Patrik: Yeah.

James: You know, get the tracheostomy out of his throat and get the mittens off. You know, then try to get him to rehab.

Patrik: Yeah. The other thing, the other thing that I can see is your dad has made a lot of progress in the last two weeks. You know, he’s gone from ICU, coming off the ventilator, now, you know, they’re talking about downsizing his tracheostomy. You know, that’s all good. But the, you know. He’s made a lot of progress, but now it’s stalling a bit. You know? And that, taking the next step, could take a lot longer than going out of ICU. Right? So, you know, the recovery has been pretty good in the last two weeks, in the bigger scheme of things. And now, it’s stalling. It’s not moving forward as quickly as you would like. So, you know, you … And that could just simply take time.

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James: Right. Alright, I’ve got to run, guys. Patrik. Christine, you have Patrik’s phone number, and you have an email, so if you want to talk to him just call him back.

Patrik: Any time. Any time.

James: Patrik, if you don’t mind, I don’t mean to put you out. Whenever you have time, it doesn’t have to be now. But if you could respond to my email-

Patrik: Yeah, yeah, I will. I will.

James: … If you sent a summary of what we talked about.

Patrik: Absolutely.

James: I like to refer back to things, so I remember what you said.

Patrik: Yeah yeah. No, no.

James: Because you’re really helpful.

Patrik: I was going to email you, but I needed a little bit more background, what happened in the mean time. That’s why I wanted to talk to you first. Because there were some links that were missing, you know, where was he at the exact date. But now that I have more information, I will respond, for sure.

James: Okay, perfect. Thank you so much, Patrik. Talk to you soon.

Patrik: You’re very welcome. You’re very welcome. Take care.

Christine: James, can you call me?

James: Yep.

Christine: Thanks, Patrik.

Patrik: You’re very welcome. Take care. Bye-bye.

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