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

What Are the Ways For My Dad To Survive If He Can’t Come Off the Ventilator 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 Isaac, as part of my 1:1 consulting and advocacy service! Isaac’s dad can’t be weaned off the ventilator in ICU. Isaac is asking what are the parameters they should consider before doing a tracheostomy on his dad.

What Are the Parameters to Consider Before Doing a Tracheostomy On My Dad in ICU?

“You can also check out previous 1:1 consulting and advocacy sessions with me and Isaac here.”

Part 1 

Patrik:   Intensive Care Hotline, Patrik speaking. How can I help?

Isaac: Hello, Patrik. Good day, this is Isaac.

Patrik: Yes. Hi, Isaac. How are you?

Isaac:  I’m good. I am calling you again to consult with you regarding my thoughts about taking my dad home.

Patrik:  Okay. So can you tell me more about it?

Isaac:  So, I’d like to take him home. He might just have to come back and do the tracheostomy. Anyway, I think he just have to do the tracheostomy. He is fully functioning, he can talk with you. I know he can’t talk but he understands everything, and he looks like he’s back but I think maybe that’s just a few things he’s having because you know, he still has cancer. Like I’m thinking of buying him a lot of time, and I don’t know how much longer he has to go on a ventilator.

Patrik: Yeah.

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Isaac: It could take weeks. When I come in, and have you made a decision, and I’m kind of like … I just would hate to make a decision taking a risk, percutaneous endoscopic gastrostomy (PEG) tube or a tracheostomy, and he didn’t need it. But I’m like okay, he’s not been off the ventilator and it’s been like long, kind of like …

Patrik: Yep. There is one thing you need to know about the percutaneous

endoscopic gastrostomy (PEG) tube so have they mentioned to you that once they’ve done a tracheostomy, have they mentioned to you that they might send him to LTAC?

Isaac:   Yeah.

Patrik: Right.

Isaac:  Because he’s going to be on a ventilator. So that’s why I was fighting for him to go home, but I started thinking, “Man, I was fighting just for him to go home,” and I mean, if he’s just going to have, I mean BiPAP… I don’t know at this point, because I’m kind of like just to get him home on a BiPAP but if I pick up the BiPAP, what’s going to happen? Is he going to be suffering? And then he’s not going to be able to eat on a percutaneous endoscopic gastrostomy (PEG) tube, it’s like just doing all this and then just starting all over.

Patrik:   Yeah. So the problem is, Isaac … So you know going home, as we mentioned, is very difficult because yes, you can set up services at home but you need a service provider. And it’s very unlikely that you will find a service provider.

Isaac:  Yeah.

Patrik:  Not in the short term, okay. So let’s just say he’s going to have a tracheostomy and a percutaneous endoscopic gastrostomy (PEG) tube, right?

Isaac:  Yeah.

Patrik: They might send him to LTAC pretty quickly. Have you done any research about LTAC?

Isaac:  No.

Patrik:  Right.

Isaac:  We try to find and we find a note about it.

Patrik:  Right, so …

Isaac: Okay.

Patrik:   Yeah, so when patients go from ICU to LTAC … You know ICUs are trying to sell you that LTAC is this magical world where all patients are getting off the ventilator. Well, nothing could be further from the truth. LTAC is the better version of a nursing home.

Isaac:  Yeah.

Patrik:  Okay. So a patient goes from ICU more or less to a nursing home, which is ridiculous in and of itself. So by you and that … The hospital won’t be telling you any of that. They’ll just tell you oh, he needs a tracheostomy, he needs a percutaneous endoscopic gastrostomy (PEG) tube, and Bob’s your uncle sort of thing. But the reality is this, that once he has a percutaneous endoscopic gastrostomy (PEG) tube, he’s a candidate for going to LTAC. Once he is at LTAC, things will be going probably from bad to worse, okay. I would not-

Isaac:  Yeah, because it’s like they don’t have much care there.

Patrik:  It’s ridiculous. As I said, LTAC is a shocker, it’s a shocker, but you know. So they’re not telling you the other side, they’re just telling you he needs a tracheostomy and a percutaneous endoscopic gastrostomy (PEG) tube. Now whilst I believe he needs a tracheostomy, there’s no rush with a percutaneous endoscopic gastrostomy (PEG) tube, there’s absolutely no rush with a percutaneous endoscopic gastrostomy (PEG) tube. There’s no hurry. You know I’ve seen people with-

Isaac:  You know I’ve seen him. He was thinking to do the percutaneous endoscopic gastrostomy (PEG) tube first because he’s still on a ventilator, and then to do that after so that he has enough oxygen while they do the percutaneous endoscopic gastrostomy (PEG) tube. I mean like, if you’re going to do it, then go.

Patrik: Yeah, I call … Yeah, look, it’s up to you of course. I’m just telling you, I’m just trying to give you the picture of options, and also … Once he has a percutaneous endoscopic gastrostomy (PEG) tube it’s much easier for them to push your father out. The LTAC place will probably not take your dad without a percutaneous endoscopic gastrostomy (PEG) tube.

Isaac:  Oh, good.

Patrik:  Right.

Isaac:  So then it’s better he stays in ICU, right?

Patrik: I think he’s much better off in ICU. Rather than going to LTAC, he could also go to a step-down ICU, assuming that they’ve got the step-down ICU in this hospital.

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Isaac:  How would he be able to eat on a tracheostomy?

Patrik:  He won’t be able to eat on a tracheostomy. He will need a percutaneous endoscopic gastrostomy (PEG) tube or he will need a nasogastric feeding tube. He won’t be able to eat on a tracheostomy.

Isaac:   Yeah, because he has the nasogastric tube now but they’re saying it’s temporary because they keep putting him a new one after months, what do you think?

Patrik:  I’ve seen nasogastric tubes in for up to three months.

Isaac: Yeah.

Patrik:  Again, depending on how much research you’ve done … Look, what they’re not telling you is this, they’re trying to sell you a percutaneous endoscopic gastrostomy (PEG) tube but they’re not telling you that once he’s got a percutaneous endoscopic gastrostomy (PEG) tube, he’s easy prey to be sent to LTAC. If you-

Isaac:  Yeah.

Patrik:  Right. So you’ve got to-

Isaac: Yeah.

Patrik:  Right. If you keep the nasogastric tube he’s not a candidate for going to LTAC. Very few LTACs will take a patient without a percutaneous endoscopic gastrostomy (PEG) tube, very few. Okay, so you’ve got to play the game a little bit here. As I said, most-

Isaac:  All right.

Patrik:  Some patients I’ve seen with a nasogastric tube for two months, three months. Probably not ideal but, there’s no hurry. You can always give consent to the percutaneous endoscopic gastrostomy (PEG) tube down the line. There’s no hurry.

Isaac:  And it doesn’t matter what … Like if you do it before the tracheostomy or after the tracheostomy, it will not cause any worry?

Patrik: No, it doesn’t really matter.

Isaac:  Like breathing-wise?

Patrik: Not at all. One of the risks that you’re having with the nasogastric tube is if he pulls it out, which is easy, he can pull his nasogastric tube out very easily, they have to reinsert it and… Is your dad moving his arms much? Not at the moment, is he?

Isaac:  Kind of, he is. For some reason like when, the first time they took him off the ventilator, and they pull out the feeding tube with it, but I guess they weren’t supposed to, but then my sister had seen that they were having a hard time putting the feeding tube back in his nose, and he was awake. He was battling trying to resist the tube.

Patrik:  Sure. Yeah.

Isaac:  It was hard seeing him like that.

Patrik:  Yep. No surprises there. It is very uncomfortable. But then once he’s got a percutaneous endoscopic gastrostomy (PEG) tube, he’s easy prey to go somewhere else.

Isaac:  Yeah, I wouldn’t want that. Because yeah, that’s why I wanted him to go home, so I get what you’re saying. So within the family, they don’t want to do the percutaneous endoscopic gastrostomy (PEG) tube right now. He kept feeding through the nose.

Patrik:  Correct, for now.

Isaac:  Try some breathing trials on him today. And then, they’re trying to go about the BiPAP but like you don’t want to just send him home on the BiPAP. But if we’re sending him home on the BiPAP, then I take the BiPAP off him, and if he can’t breathe, and I’m going to be coming right back. And then he’ll be in foster care, but then you’re pretty much letting him die.

Patrik: Yep. Very much so.

Isaac:    So I don’t think that’s a good idea, huh?

Patrik:  No. I mean, by all accounts, yesterday when we spoke to the nurse, I do believe he needs a tracheostomy … Unless something drastically has changed today, he will need a tracheostomy.

Isaac:  Yeah, that’s what I’m leaning towards too as well. So I’m going to go in there and then I’m going send you pictures of … What number do I send it? The one that you texted me on?

Patrik:   Yes. Please. Yep.

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Isaac:  Okay, I’ll send you pictures of his vitals, and then I’ll send you pictures of the machine.

Patrik:  Yeah.

Isaac:    And then after they do the breathing trial, I’m like hey, how long was it? Like how many minutes does he tolerates it without any fatigue? I don’t know if they ran a timer that day because I wanted to see what breathing trials recorded would make. And I’m going to try to push it up until tomorrow. And just coping like with his nutrition and let him know, getting him a little bit stronger, and then he looked a lot better last night when I came by.

Patrik:  Right.

Isaac:  They gave him another bag of antibiotic so I’m just hoping like for a miracle, that his lungs get a little bit stronger, then his pneumonia’s a little bit gone and then I did ask the respiratory therapist how is he doing, how is the chest X-ray, well honestly, from last week to this week, the chest X-ray improved a lot. I was like really, she’s like yeah because that man has a scarring in his lungs few months ago, and a lot of it is clearing up. I said okay, but that still doesn’t mean he can get off the ventilator. But I’m like maybe there’s a little bit more hope.

Patrik:  Very much so.

Isaac: Okay. So I’m going to see my dad and then I’ll take pictures and all that, and then I’ll call you back after.

Patrik:   Yep, please. Please.

Isaac:    So that’s for sure, like I know you’re not up to percutaneous endoscopic gastrostomy (PEG) tube, that somebody doesn’t want to do the percutaneous endoscopic gastrostomy (PEG) tube, that’s a no-rush, right?

Patrik:  No rush. They can’t force you, they can’t force you to do anything.

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Isaac:   Okay, because they kind of saying like, “What am I waiting on?” Because they can’t force me to make any decisions.

Patrik:  Exactly.

Isaac:  All right then. I’ll just say the family will keep communicating with each other and I want to make sure they’re all on the same page. They don’t want a feeding tube with him at this point, they feel like if he’s getting the feeding through his nose, then that’s not a problem at this point.

Patrik:  Yep. You don’t need-

Isaac:  They will do it, they’re going to come tomorrow.

Patrik:  Exactly. Yep.

Isaac: And we’re leaning towards the tracheostomy, but we’re just hoping for what’s in the next day or two. We’ll see if he can breathe on his own. If not, we’re leaning towards the tracheostomy, and we’ll just go from there.

Patrik: Exactly.

Isaac:  Okay. So I’ll send you pictures right now in a little bit, and I’ll call you after.

Patrik:  Yeah. Okay. Thanks. Thanks, Isaac. Thank you. Bye.

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Isaac:   You’re welcome. Bye-bye.

Patrik:   Bye.

The 1:1 consulting session will continue in next week’s episode