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 makingfast, 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 Our Dad Get Off the Ventilator and Avoid the 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 Isaac, as part of my 1:1 consulting and advocacy service! Isaac’s dad is on a breathing machine in ICU. Isaac is asking what are the ways for his dad to survive if he can’t come off the ventilator.
What Are the Ways For My Dad To Survive If He Can’t Come Off the Ventilator in ICU?
“You can also check out previous 1:1 consulting and advocacy sessions with me and Isaac here.”
Part 1
Isaac: No.
Patrik: No seizures previously?
Isaac: No.
Patrik: Right. Okay. On the coalface, if he’s been on the ventilator for three weeks now and he’s not breathing up, he needs a tracheostomy. Let’s call
it for what it is. However, what I would also want to know is have you spoken to a respiratory therapist?
Isaac: Yeah, the respiratory therapist, I asked her, do you recommend a tracheostomy or what she thinks, and last week, they’re like, “Your dad’s doing pretty good. He looks strong. I think that he’s going to be able to pull off,” and then she said, when he started not doing good again, but then they saw
cloudy in his urine, so they said, “Oh, maybe it’s the infection.” They kept going back and forth about what it is. And now they’re saying a BiPAP machine is… because he can’t go home with a tracheostomy, because then he has to be in his home, but if they do the BiPAP with the percutaneous endoscopic gastrostomy (PEG) tube, then he has the chance to go home,
but I said, “Am I making the right decision? What do I do here?”
Patrik: Look-
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Isaac: Do I keep waiting for them to wean him off the ventilator, or am I waiting too long?
Patrik: The question here is, can he be weaned off the ventilator, and what are they doing to potentially achieve that? That’s what I would want to know, and that’s the sort of thing we don’t know at the moment. But if he’s still on so much support, the question is why is he not breathing up, and that’s why
I’m asking has he had a stroke, is there something else that they haven’t told you, just because-
Isaac: They keep saying it’s stage 4 cancer and then he has emphysema and chronic obstructive pulmonary disease (COPD), that his lungs are just very… They said they’re pretty much gone.
Patrik: Right. How long has he had chronic obstructive pulmonary disease (COPD) for?
Isaac: For maybe seven, 12 years.
Patrik: Right. And, at home, was he on oxygen because of the chronic obstructive pulmonary disease (COPD)?
Isaac: No.
Patrik: No.
Isaac: No. Just the last month, they put him on two liters when they found out he had pneumonia. He would use it for an hour out of the day if he felt
like a little bit… He wouldn’t use it. That’s why her, not getting off the ventilator was like, whoa… It’s shocking that he can’t get off the ventilator.
Patrik: Absolutely. Prior to-
Isaac: I just don’t want to make the wrong decision.
Patrik: Yeah.
Isaac: He never wants me to give up on his life, so I have to do something. Do I do the BiPAP to bring him home comfortably, but what happens when they take the BiPAP off?
Patrik: I don’t think he can have BiPAP at the moment without a tracheostomy.
Isaac: No?
Patrik: No, no. The reason for that is if he’s on so much support, if you had him on a BiPAP mask and you took the mask off, he would stop breathing, right? Whereas, with the tracheostomy –
Isaac: Yeah.
Patrik: Whereas with the tracheostomy, you can keep ventilating. There are no limitations on what you can do with a tracheostomy. But, I’d still argue you don’t need to make a decision today. I argue your next step is to look at medical records. The next step might be for you and for me to talk to the doctors to find out a little bit more why do they think he’s not breathing up at
all. There must be a reason.
Isaac: Yeah.
Patrik: There must be a reason. So, you can confirm what he’s saying, that when you are there, he’s alert, and if you ask him to squeeze your fingers, he would squeeze your fingers, if you asked him to wiggle his toes, he would do that? You can confirm that?
Isaac: Yeah, he does all that. I was explaining to him what they were saying. He shook his head on the tracheostomy, and I said, “But it’s to live or die?” And then he said, “Yeah.” He knew it, because that was his wishes, but he’s like… he didn’t want to go that route. I know it’s a hard call.
Patrik: Just remind me, Isaac. Your dad is 58?
Isaac: She’s 71. She’ll be 72 on September 17th.
Patrik: Okay, 71. Okay. So, that is my… On the coalface, I’d say he needs a tracheostomy, but I would, if I was you, get access to the medical records. Get that latest chest
x-ray report. Everything else looks normal. I asked about… You might’ve heard me ask about white cell count and hemoglobin, and that looks all normal. Nothing unusual in ICU that someone is on antibiotics for an infection. He’s on norepinephrine. Again, that’s a medication that’s commonly used in ICU. I’m not too
worried about that. What I am worried about is really if he’s been off sedation for so long, and he’s not breathing up, that’s definitely a concern, especially since he’s awake. There are a lot of patients in ICU-
Isaac: Yeah.
Patrik: … that are not awake, and that are not breathing up. Fair enough. But he’s awake.
Isaac: Yeah.
Patrik: I’m wondering whether-
Isaac: Yeah, that was the case from the beginning. They couldn’t keep him awake to get him off. And then when he got awake, he looked strong enough to get off. Oh, they did try to get him off one time, and then it looked rushed. The respiratory therapist said his carbon dioxide levels are too high, don’t
get him off, but the doctor said, “Let’s try it anyway,” and then sure enough, in the middle of the night, they called me and they said, “We had to put him back on, he was breathing way too heavy.”
Patrik: When was that? How long ago was that?
Isaac: Little over a week ago.
Patrik: Right. And with the chronic obstructive pulmonary disease (COPD) … and that could be the main issue there.
Isaac: Yeah.
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Patrik: With his chronic obstructive pulmonary disease (COPD), he has high carbon dioxide (CO2) as a baseline, right? He would have a high carbon dioxide (CO2) as a baseline with chronic obstructive pulmonary disease (COPD). Now, he’s in a worse condition, and the carbon dioxide (CO2) might
be too high for him, and his respiratory center in the brain might almost be intolerant to those high carbon dioxide (CO2) levels. That might be an explanation, but again, that’s something… That’s the disappointing part. They would need to explain all of that to you.
Isaac: Yeah. Well, they were trying to explain that his cancer, his emphysema, and everything, it’s really, really bad. But he says, “I know you want to bring him home, but what do you want to do here?” She said, “Do you want to try the BiPAP and bring him home and do the percutaneous endoscopic gastrostomy (PEG) tube and see if he can tolerate it off the BiPAP, for how long, or do you want to do the tracheostomy? But he’s going to end up in a nursing home with a tracheostomy.”
Patrik: Yeah. I think those are the questions that need to be answered, but I would still, if I was you, I would still want to know, why is he not breathing if he’s awake?
Isaac: Yeah, and how would I find that out?
Patrik: Well, we need to talk to the doctors. The nurse may not necessarily have the answer to that. One of the doctors probably will have the answer to that. I would ask-
Isaac: They tell me that his body’s too weak.
Patrik: What’s your take on that? Do you think that his body is too weak?
Isaac: He does look like… To me, I was thinking, can pneumonia be a factor? But I don’t know.
Patrik: Say that again? Can pneumonia be… What was that?
Isaac: Oh, I was wondering is the pneumonia making his lungs weaker?
Patrik: Definitely. Look, someone that’s on a ventilator in an ICU is at high risk of all sorts of things to happen. So, the risk for things to go wrong on a ventilator is there. And the risk of people de-conditioning on a ventilator is there, especially if there are comorbidities such as, in your dad’s case, lung
cancer.
There’s certainly the risk for all of that. And if he has stage 4 lung cancer, and depending on how far advanced it is in the lungs, he may simply not be able to breathe. But again, that’s why I would-
Isaac: Yeah, that’s-
Patrik: Say it again?
Isaac: Yeah, that’s what I’m thinking, and I’m like, “Wow.”
Patrik: Right.
Isaac: Because the doctor’s like, “Do you want to put him through surgery and on the tracheostomy? Maybe try and get the BiPAP machine and let’s see how he tolerates it, and just do the percutaneous endoscopic gastrostomy (PEG) tube before, so that if worse gets to worst, if he can’t eat while on BiPAP, at
least he has a feeding tube.”
Patrik: Yeah. The problem there is this, Isaac. So, let’s just say he was to have the BiPAP. Let’s just say they would take out the breathing
tube in the mouth and they would put him on BiPAP with a mask, and they would be doing the percutaneous endoscopic gastrostomy (PEG) tube. One of the biggest risks there is, that if he is being fed and he’s on BiPAP, and there’s all this air flowing in his stomach, there’s the risk for vomiting and aspiration. That risk-
Isaac: Oh, yeah.
Patrik: That risk at the moment is fairly low because he’s got the breathing tube. The risk for vomiting and aspiration with a tracheostomy is also minimized.
Right? So, if he was to have BiPAP and a percutaneous endoscopic gastrostomy (PEG) tube and he would vomit and aspirate, he would end up with a tracheostomy anyway. Right?
Isaac: Oh, yeah.
Patrik: So, you’re stuck in a pickle there. You’re stuck between a rock and a hard place here.
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Isaac: How would I know?
Patrik: That’s why I’m saying, let’s talk to the doctors and get the facts, why is he not breathing. Let’s get the facts, why is he not breathing, get access to
the medical records, and then you can make a decision from there. But let’s get more facts. Let’s get a list of all medications as well. That’s why I’m saying, let’s get access to all the medical records, let’s get a list of the medications, let’s get x-ray results. Let’s get the whole picture.
Isaac: Can I make an appointment with you tomorrow at 9:30? Because that’s when the doctor’s going to be there…
Patrik: Yep.
Isaac: At 9:30, and she’s like, “I’ll talk to you again tomorrow,” so she comes in and she checks, “How are you doing?” And I’m kind of like-
Patrik: Yeah, let’s do that. Yeah, sure. Absolutely.
Isaac: And then I could just tell her you’re my cousin, and then I can have you on speaker, and she can talk to you.
Patrik: Yeah, absolutely.
Isaac: We can just do it. Because I did tell her that I was speaking with the family, and we’re all trying to figure out what we do from here.
Patrik: Yep. Let’s do that.
Isaac: And then, you could ask her any questions, and we can go from there.
Patrik: Yeah.
Isaac: And then, what other companies do this… that I can try contacting if they do care for a ventilator?
Patrik: The only company that I’ve come across is BAYADA.
Isaac: BAYADA.
Patrik: I’ll text it to-
Isaac: And it’s B-A-Y?
Patrik: I’ll text it to you. I’ll text it to you.
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Isaac: Oh, good. Yeah. So, I’ll check for that as well, because I thought, “Man, would he be better off with a tracheostomy?”
Patrik: Look. Look. We are in the business of home care as well, right?
Isaac: Yeah.
Patrik: I’m all for ventilation and tracheostomy at home for the right patient, but you wouldn’t wish that on anyone if they can come off the ventilator in the first
place.
Isaac: Exactly. Yes.
Patrik: We’re still gathering information.
Isaac: Right.
Patrik: Because once a tracheostomy –
Isaac: Okay.
Patrik: … is done, it’s done.
Isaac: Yeah. That’s why I felt rushed into the BiPAP or the tracheostomy, and I’m like, I tell them, “What if he can breathe off the BiPAP? Then, he’s 24/7 on the BiPAP.” And I said, “So then, wouldn’t he be better off with a tracheostomy?” She said, “But he can’t be home in a tracheostomy, so you need to
make up your mind,” and I said, “Oh, wow.”
Patrik: Yeah. But, you can-
Isaac: Can you text me that company so I can find out as well?
Patrik: I have already.
Isaac: Oh. Okay.
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Patrik: I have. Did you get it?
Isaac: Oh, yeah. I got it. Yeah.
Patrik: Yeah. So, 9:30 AM tomorrow.
Isaac: Yeah.
Patrik: Yep. Okay. Yep, that’s fine.
Isaac: Perfect. Okay. So, I’m going to try to get any information I can today. I’m going to take pictures of his vitals. I’m going to take a picture of the whole machine, so that way we can get more of a picture of what’s going on, so I can have that for you tomorrow as well, and I’ll send it to this number where
you-
Patrik: Please. Please.
Isaac: … texted me.
Patrik: Most importantly, list of medications he’s on.
Isaac: Okay, and I’ll get that from the nurses tonight.
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Patrik: Yep.
Isaac: Okay. Thank you so much. Thank you for speaking with me. I’ll talk to you tomorrow at 9:30.
Patrik: It’s a pleasure. It’s a pleasure. Thanks, Isaac. Thank you. Bye. Bye.
The 1:1 consulting session will continue in next week’s episode
