Why are The Doctors in a Hurry for a Tracheostomy and PEG (Percutaneous Endoscopic Gastrostomy) for my Mom in ICU?

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 We Keep Our Ventilated Mom in ICU if the Doctors Insist on Sending Her Out to LTAC?

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 ICU with a nasogastric tube, and he is asking why the doctors are in a hurry for a tracheostomy and PEG for his mom.

Why are The Doctors in a Hurry for a Tracheostomy and PEG (Percutaneous Endoscopic Gastrostomy) for my Mom in ICU?

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

Patrik: Go on.

Belle: That’s what I’m confused about is the fact that we don’t have the PEG. That gives her… Why does that make a difference if we’re going to send her to stroke rehab? Is she going there and going back to the ICU or once she’s in stroke rehab, she’s out of the ICU?

Patrik: She’s out of the ICU. She’s out of the ICU.

Belle: Even without the PEG. Okay.

Patrik: Right. Look, I tell you about PEG (Percutaneous Endoscopic Gastrostomy) So for now, do not give consent to a PEG. And I do expect pushback, because they’re not used to people questioning. I would expect some pushback, but you got to stand your ground. Once you’ve selected, once where she should be going next, the issue of the PEG might come up again. But you are in charge. You need to feel confident about where she’s going next. If you give consent to a PEG, they will just push her out indiscriminately and send her to wherever they have their affiliations. You need some time to see where she should be going.

Lloyd: And what is an adequate time? If she’s going to have the PEG and let’s say she’s off the vent and she’s still on the feeding tube and they’re not really, they said they have minimal rehabilitation here or so they say, what’s the adequate time to kind of… So we should basically be looking for a neurological rehabilitation place to try to get her to once she is able to be off the ventilator. Right?

Patrik: Look-

Lloyd: And will they take her just with the feeding tube? The other place?

Patrik: That part, I don’t know. This is something you need to work out. But for now, they can do a PEG tomorrow if they want to. But you giving consent to a PEG now, I would argue, puts you in a compromising position. You stay in control of that PEG. That’s a big leverage point for you. And that’s why you should expect some pushback, but you just ignore it, because they know that you hold all the cards without a PEG.

Lloyd: Yeah. And they were saying that she won’t get enough nutrition through the-

Patrik: Oh, that’s rubbish.

Lloyd: Through the guts, but she’s been getting nutrition now, I guess.

Patrik: Okay, so the difference between PEG and nasogastric tube is just the location. The tube is the same. Both tubes end up in the stomach. Right? It’s just one tube that the nasogastric tube goes into the stomach, through the nose and the PEG tube goes into the stomach through the abdominal wall. You can give 40 mls an hour of feeds through the nasogastric tube or through the PEG tube. It’s going in the same place. Does not make any difference. So if she gets 40 mls an hour, for example, now, right? Through the nasogastric tube, and she would have a PEG tomorrow, they would continue with 40 mls an hour. Right? It’s nonsense what they’re telling you. Absolute nonsense.

Belle: Yeah.

Lloyd: Okay. And then there’s like…

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Belle: They were talking about the skin deterioration if we keep in the nasogastric tube.

Patrik: Yes. That’s a concern definitely. It’s just something they need to take good care of it, that’s all. Yes, it’s probably more work for them, but then they need to check that she doesn’t get a pressure sore in the nose, in the nostril, I agree with that. But then even with a PEG tube, they would need to do a dressing change every day. So whether you do a dressing change every day with a PEG tube or at the nasogastric side of things, not really any difference, just a different location.

Belle: Okay.

Lloyd: Have you heard of a jejunostomy tube?

Patrik: Yep.

Lloyd: Could that…

Patrik: Why would they suggest that?

Lloyd: Oh no, they didn’t. I was just looking-

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Patrik: Okay, yeah, sure. I tell you, when they would use a jejunostomy tube, so sometimes people don’t absorb nasogastric tube feeds for whatever reason. Maybe they haven’t got the right formula. Maybe there are other digestive issues. And that puts them at high risk of aspiration, right? Because there’s too much food in the stomach and there’s a chance of reflux. So if that’s an ongoing issue, then one might consider a jejunostomy tube, because it sits like the name suggests in the jejunum, it sits below the stomach, and then you give a different-

Lloyd: Small intestine.

Patrik: Right, in the small intestines, then you give a different type of feeds. And with different type of feeds for the small intestines, you don’t have the reflux.

Lloyd: Okay. And here’s the other thing that she was saying. She was saying that if we keep the tube in his nose, that there will be risk of aspiration. But my thing is, if she has the ventilator now and she has a G-tube (Gastrostomy tube), the tracheostomy is going to have a balloon. It’s supposed to prevent anything from going down. I mean, why is it telling me?

Patrik: No, I tell you why there is a little bit of a higher risk with a nasogastric tube. So if you put a PEG tube in, it’s sort of reasonably stable, right? With the nasogastric tube, if for whatever reason it becomes dislodged and the tip of two of the tube migrates, it could potentially then, if no one picks up on it, it could potentially then cause the feeds to go into the lungs. I agree with that. I agree with that.

But then again, it’s a rare occurrence. Now also what I can show you, there are now nasogastric tubes that are pretty safe and avoid dislocation. They’ve just come on the market in the last five years. I’ll send you something there. Yes, there’s always a risk one way or another. I tell you what I think is the biggest risk for a PEG tube though, and I don’t know whether I mentioned that on one of our other calls. There is the perception of a permanency with a PEG tube. So what do I mean by that? I do believe that when someone has a nasogastric tube, that is only ever temporary.

The goal for someone with a nasogastric tube is to eat and drink. A PEG tube, however, has this perception in the medical community and also in the nursing community that a PEG tube is permanent. The perception is, well, if someone has a PEG tube, that person will never, ever eat or drink again. And that is not a good perception to have.

Lloyd: Okay. So can you send us that? The new-

Patrik: Yes, I will send you, I need to do a Google search, but I will send you that so that you have that. The other thing, did I send you an article about a PEG versus nasogastric tube?

Lloyd: Yes.

Patrik: Right.

Lloyd: Yeah, that one is, yeah, I think we’re definitely leaning towards, we just like, they’re scaring us.

Patrik: Of course. Well they’re-

Lloyd: Saying all these things.

Patrik: I tell you why they’re scaring you. They’re scaring you, because they are scared that you don’t comply like everybody else.

Lloyd: No.

Patrik: That’s why they scare you because they are scared.

Lloyd: Okay.

Belle: Do you see this behavior with all the-

Patrik: All the time.

Belle: That difficult?

Patrik: All the time. You are in the one percent of all families you’re questioning. They don’t like it. They’re not used to it.

Lloyd: Yeah. I mean, we’re questioning medications.

Patrik: Good.

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Lloyd: They’re giving her medications that cause fever, and she’s been spiking a fever every day. So they were giving her Modafinil and then they were giving her something, another drug that was a companion to that, that causes high liver enzymes. And she has super high liver enzymes. And so I told them to stop it, and then she started getting so much better since then. I don’t know if there’s a correlative effect or if it was just time, but she was getting definitely much better.

And so it depends on the nursing staff, that some of them are forthcoming. Some of them get agitated if you ask.

Patrik: Of course.

Lloyd: And it depends on who it is. But it’s like, so that’s what we’re trying to deal with right now. Yeah. Go ahead.

Belle: …we did with a paralyzing drug. Can you explain that?

Lloyd: Oh, yeah. They gave her a paralytic drug because they said that they didn’t want her to wake up and realize that she was paralyzed, even though she can’t move her arms and legs.

Belle: Is that how they reintubate? They have to paralyze?

Patrik: Yeah. It’s standard practice. The reason its standard practice is when you intubate someone, you have only a few seconds to get that breathing tube in. And because you only have a few seconds to get the breathing tube in, you need to paralyze someone, because the risk of the airway collapsing or spasming is too high, and therefore you need to paralyze someone. So I can concur with that, that it’s standard practice.

Lloyd: Okay.

Belle: Okay, great.

Lloyd: We may give, yeah. Okay. All right. So I don’t know. I think I’m afraid right now. We don’t know. All right. So tomorrow we’ll just have to look for a neurologist in some of the places and make sure they can take someone with a nasogastric tube, I guess.

Patrik: Yeah.

Lloyd: As the next step after.

Belle: Well, the-

Lloyd: Generally-

Belle: If we found a really good facility, and they said that she needs to have a PEG tube, but we won’t take her. Is it worth it to get PEG tube in order for us to take her to that stroke facility?

Patrik: Potentially, but not right away.

Belle: No, I agree. We wouldn’t proactively do it. I’m just saying if it came down to that?

Patrik: 100%, no.

Belle: Make a demand.

Patrik: Then you definitely should weigh up the pros and cons. Absolutely. But at the moment it would not serve you, because it puts them in charge.

Belle: Yeah. We don’t have a chance to do anything. We just get kicked out.

Patrik: That’s right.

Belle: We don’t have a choice.

Patrik: That’s right.

Lloyd: Yeah. And ideally, what do you think is an adequate time to kind of flick stick around with the NG (Nasogastric) tube on a thing?

Patrik: I’ve seen it-

Lloyd: Within the hospital.

Patrik: I’ve seen it for up to six months.

Lloyd: Oh, wow.

Belle: But I was saying, and I think trache in this case, if the trache goes smoothly and then she recovers quickly, I mean, I’m assuming they made it sound like she’s bouncing back in a few days. Are we at that point, are we now actively looking outside to get her into one of these places?

Patrik: I would say so.

Belle: It doesn’t sound like they’re going to help us.

Lloyd: Yeah.

Belle: It sounded like the hospital, all the hospital said is when we’re about to discharge you, that’s when you get to meet with people that are going to say where she’s going. There’s no meeting ahead of time. It’s like at the last minute. That’s where I’m going to give you a piece of paper and say, yeah, here’s your choices, these three places and-

Patrik: Interesting.

Belle: That’s it. There’s no-

Patrik: Yeah.

Belle: Ahead of time.

Patrik: One size fits all.

Belle: Yeah.

Patrik: Yeah.

Belle: No, I see it.

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Patrik: Yeah. No, and that’s-

Lloyd: …have to do.

Patrik: Right, and that’s why they’re so adamant for a PEG tube. For them it’s almost like they have pathways for patients like your mom, PEG, trach, out.

Belle: Right.

Patrik: For them it’s the pathway.

Lloyd: No, go ahead.

Belle: I was going to say this new NG tube that you were talking about, do most hospitals have that?

Patrik: It’s reasonably new. I just send a link to you on your cell phone, Lloyd

Lloyd: Okay.

Patrik: I’ve seen it in the last five, seven years. It’s reasonably new, but it’s definitely been around.

Lloyd: Okay. So we can tell them that that’s what we want?

Patrik: You should not hold back.

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Lloyd: Okay. Oh, that’s what it’s called, an AMT Bridle Pro? Okay. It’s like a loop.

Patrik: Yeah. It’s like a loop.

Lloyd: It’s a loop thing.

Patrik: It’s a loop.

Lloyd: Okay. All right. Okay.

Belle: I’m still shaky on the timeline. When we tell these guys we’re not getting the PEG and we’re going to get the trach done. I’m still confused that, so she’s now going to be in the ICU. She’s still going to stay in the ICU at this point. Even if she’s off the ventilator?

Patrik: I would-

Belle: Comes off the ventilator, does she get-

Patrik: Yeah.

Belle: …the ICU?

Patrik: Two ideas there. So they do the trach. Let’s just say she can come off the ventilator reasonably quickly. I do believe that they might have a step-down ICU. You should probably ask for that, whether they have a step-down ICU.

Belle: Okay.

Lloyd: Okay.

Patrik: Or sometimes they have, instead of a step-down ICU, they might have a high dependency respiratory unit where they take trach patients. And what you do need to make sure is the following. You do need to make sure that she’s going somewhere within the hospital where they can confidently manage a trach. So let’s just say the ICU doesn’t have a step-down ICU, and let’s just say they don’t have a respiratory floor or sort of a high dependency respiratory unit. Letting someone leave ICU with a trach can be dangerous, but not less dangerous than going to Long Term Acute Care (LTAC), because they can barely handle a trach either.

Belle: Right. Yeah.

Lloyd: Okay.

Belle: And I’m assuming they’re not going to take any chances. Within their own hospital they’re going to play it safe. They’re not going to kick her out.

Patrik: Not necessarily, I’ll tell you why. Their pathway is trach, PEG, and LTAC. That’s their pathway.

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

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