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
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 Joy, as part of my 1:1 consulting and advocacy. Joy’s dad is in ICU ventilated with tracheostomy and she is asking if mobilization can help her dad to wean off the ventilator.
My Dad is in ICU Ventilated with Tracheostomy. Can Mobilization Help Him to Wean off the Ventilator?
“You can also check out previous 1:1 consulting and advocacy sessions with me and Joy here.”
Rey: He asked permission if we wanted to know what his thinking was for a time factor that my dad had with the emergence of this. They tell us it’s a-
Patrik: A tumor.
Rey: Cancerous tumor on his forehead, a growth.
Patrik: Like a skin cancer?
Joy: A multiple myeloma.
Rey: It’s a lump and it’s soft to the touch. It’s not firm, but it has been getting larger the past several days.
Joy: And they said it’s pushing on his brain, but it’s not in his brain.
Patrik: Okay. It’s external.
Rey: It’s between the skull and the skin. But the effects of it is that they say it’s creating some pressure in there now. It’s getting large enough to create some pressure.
Patrik: Is your dad awake?
Rey: Yes. He’s awake. He’s alert. He’s aware.
Patrik: Aware. Okay. That’s a good judge.
Rey: He’s actually looking better than he was in weeks.
Patrik: Okay. So with the predictions that your dad has limited time to live, look, I can’t tell you how often that I hear this as part of ICU discussions. They’re negative. They’re negative until the cows come home, right?
Joy: Yes.
Patrik: And 90% of intensive care patients, roughly, survive. They leave intensive care alive. Now, we are not talking about what their quality of life might look like down the line, but 90% of ICU patients leave intensive care alive, roughly. Now, multiple myeloma and COVID is, from my experience, definitely not a good combination of diseases to have. There are certainly some challenges there, but what are you going to do? You’re going to tackle those challenges, assuming your dad wants to live.
Rey: Yes.
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Patrik: Right? Right. So, there should be nothing stopping you from keeping trying. Right?
Rey: Right.
Patrik: Given that he is, even if he’s only off the ventilator for 12 hours a day, let’s just say, it sounds to me like the worst-case scenario you are assuming is he’s off the ventilator 12 hours a day, roughly. And how long ago did he have the tracheostomy?
Joy: It’s only been about a week and a half.
Patrik: About a week and a half. Let’s just say a week, 10 days, doesn’t matter. That sounds pretty good to me that he’s already making progress. So the way I look at this, from what you’re sharing with me is he’s already managing half of the day off the ventilator. Imagine they’re getting his nutrition right, hopefully, and imagine they’re started mobilizing him. I would argue it can only go up from there, assuming there are no setbacks. In ICU, it’s often two steps forward, one step back. So I would prepare yourself for that mentally, as well, that tomorrow he might be off the ventilator 24 hours a day and then maybe the next day he needs to go back on it. It’s often two steps forward, one step back. But I think with what you’re sharing with me, you have reason to be optimistic.
Rey: Yes.
Joy: Thank you. Yeah. I like that.
Patrik: Right. Look, I know some people may not agree with that, but irrespective of sometimes what life throws at you, you’ve got to stay optimistic. It helps you, I believe, on all levels. And that’s easier said than done, don’t get me wrong. I know what you’re facing there, but I still think it helps everyone to stay optimistic, ignore to a degree the doom and gloom, because to a degree it’s very self-serving for them. A lot of it comes down to managing their downside. What is their downside? If they came to you and they said, “Hey, Joy, hey, Rey, your dad will be in ICU for a couple of weeks. We’ll wean him off the ventilator and off you go.” If that doesn’t happen, you could sue them. Right? So you’ve got to put it in perspective. They will be negative all day, every day, so you can’t hold them accountable.
Rey: Right. I didn’t really make anything of that when he said it. I don’t know about you, Joy, but we were already looking for other alternatives other than that hospital and that oncology division and everything, to be helping my dad. We already knew that they were not going to be the answer. So it impacted the way I felt about it.
Patrik: Right. Good. The other thing that is important here is when he’s on the ventilator, do you know by any chance what ventilator settings he’s on?
Rey: No, I do not. I can take a picture of it next time.
Patrik: That would be very helpful. That would be very helpful. Some of it also comes down to what ventilator settings is he on, how much support is he still getting? A lot of it comes down to that as well.
Rey: As a matter of fact, I can call the nurse and get the ventilator settings tonight.
Patrik: Yep. No, I would-
Joy: I’m going tonight, actually, Rey.
Rey: Oh, okay, cool.
Joy: So yeah, I can get those. And I guess-
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Rey: Well, before you go that, Joy, specifically, what numbers are we looking for, from the ventilator?
Patrik: I would be looking for a ventilation mode. If he’s breathing what’s called CPAP, C-P-A-P, or pressure support, those terms are interchangeable. But at the end of the day, they mean the same. That would be a mode where he’s close to be weaned off.
Rey: Okay.
Patrik: But then it also depends how much CPAP (Continuous Positive Airway Pressure), how much pressure support, how much oxygen, what are his volumes like. Do you know if they are doing arterial blood gases? Have you heard of that?
Rey: We had, because his CO2 (carbon dioxide) had been running high before the ventilation, so that had to do with the blood gases, I know.
Patrik: Okay. It would be good and helpful if you could send a picture of the monitor as well. He would be hooked up to a monitor. That would tell me whether they’re still doing gases or not. If he’s going to the respiratory ward, I would assume they’ve stopped doing gases, but I can’t be sure. Do you have access to medical records online where you can look up bloods, blood gases, X-ray reports? Do you have access?
Rey: I tried looking at his account online and I’m not able to access his current medications and all that kind of stuff. And his tests are all from back before. Maybe I need to talk to someone at the hospital to see if there’s a different area of the portal, the online portal, that I’m supposed to be looking in, but I wasn’t able to access it yesterday. Sorry about that.
Patrik: Look, we’re doing a lot of reviews online, where we look up medical records online.
Joy: Yeah.
Patrik: People should get access to that and it should all be there.
Rey: Yes.
Patrik: With nutrition. So, are you saying that before he had the PEG tube placed, he was nil by mouth, he didn’t have any nutrition?
Rey: He had at most less than half of what he needed to thrive. And that was for the past probably months, two and a half months before, no, it might have been closer to three months that he was getting less than half of what he needed to thrive nutritionally, orally. And so when we got the PEG (percutaneous endoscopic gastrostomy) tube in place, we were so glad that we finally are able to get him on what would be considered full nutrition, although I know what they’re giving him through that tube doesn’t compare to actual food.
Patrik: Of course.
Rey: Yeah. We were glad of that. But he hasn’t had that long to work with full nutrition. And there was even a hiccup because they stopped feeding him through the tube. They didn’t start feeding him through the tube until about a day and a half or so after they placed it. I guess because they have to, whatever, let the line prime or whatever. And then there was a hiccup in the process because it started bleeding. The tube areas started bleeding. My dad had pulled at it or something. I don’t know. My dad is also, I don’t know if Joy told you, my dad, he has hand restraints because he has a tendency to wake up disoriented and pull at his tubes and IVs and things like that.
Patrik: Have they restrained his hands because of that?
Rey: Yeah. Well, his wrists, not his hands. He can still use his hands.
Patrik: Yeah, yeah, yeah. Okay.
Joy: Yeah, sometimes they do put the gloves on.
Patrik: Yeah. Yeah. The gloves. Yeah. Yeah.
Joy: If he scratches on-
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Patrik: Right, right. Has he lost weight?
Joy: Oh my god, yeah.
Rey: Yeah. He went in the hospital over three months ago at 145 pounds. Now he may be 110 pounds, although the last figure I heard was like 100. So, I don’t know if he gained weight or something since. I’m not sure.
Patrik: How long has he been bedbound for?
Joy: Three months.
Patrik: Three months.
Rey: He’s been totally bedbound since he got to that hospital.
Joy: Oh, I’m sorry. It’s been around three weeks.
Rey: Three weeks?
Joy: Yeah. Because he went into that rehab facility between, what? June and I don’t know, what was it? Maybe July 20th.
Rey: July 18th or something.
Joy: So he was doing rehab during those months. But since then, he went back in the hospital in July, at the end of July, and he’s been bedbound since then. He’s not done any rehab except for in the bed.
Patrik: Sure, sure. And look, as much as I was talking about mobilization earlier, this is something that should happen and needs to happen. By the same token, now that I understand he has lost significant amounts of weight, it’ll probably be a slow process. The other question with all of what you shared with me is if he’s got multiple myeloma, he would’ve received blood transfusions on and off over the last few months?
Rey: He had two. He has gotten two.
Joy: The last two weeks, I believe.
Patrik: The last two weeks?
Rey: Shortly after surely, they placed the tube. Shortly after they put the tube and put him on the ventilator, he got two transfusions.
Patrik: Okay. The reason I’m asking is his hemoglobin… Have you heard of hemoglobin?
Joy: Oh yeah.
Rey: Yes.
Patrik: His hemoglobin would’ve been lowish, which is why he would’ve received some blood transfusions.
Rey: Yes.
Patrik: A low hemoglobin can also make it more difficult to wean someone off a ventilator. If you have a low hemoglobin, it means there’s less capacity for the oxygen to attach to the blood and carry oxygen around. So it’s definitely something they need to monitor and manage. Are they also giving other blood products such as platelets, plasma, or is it only red blood cells?
Rey: I don’t know what it’s comprised of what they’re giving him.
Patrik: Is it a red bag?
Rey: I didn’t actually see it. They told me over the phone that he needed to get that, and I didn’t actually see it.
Patrik: Most likely he had a full blood transfusion or what’s called red blood cells, but there could be other abnormalities where they might have to replace platelets, for example. Do you know if his blood clotting is in order?
Joy: I don’t know.
Rey: He was being given blood thinners and then they stopped it for some reason.
Patrik: They would’ve stopped it when they did the trach. They would’ve stopped it then. But only for about 24, 48 hours. They would’ve restarted that. Because it’s surgery, there’s a risk of bleeding.
Rey: Okay. Yeah.
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Patrik: So they would’ve stopped it then. If they stopped it during any other times, there might be other reasons maybe related to the multiple myeloma. I wouldn’t know. But it’s something you might ask. With the lungs at the moment, or let me ask you this, does he have an infection at the moment?
Rey: Not to our knowledge. Last I spoke with someone, he wasn’t indicated for an infection.
Patrik: Okay. Is he still immunocompromised as part of the myeloma?
Rey: I think we could probably consider him that, but he hasn’t been getting the chemotherapy, so maybe he’s not as immunocompromised as that. But maybe from the malnutrition. Just this morning I called early this morning and told the nurse to add in flaxseed oil, zinc, vitamin C and vitamin D3. He’s getting a multivitamin already, but I told him to up those amounts in addition to the multivitamin.
Patrik: Okay. Okay. What would you like to see happen next?
Rey: Well, I would like to see his lungs continuing to get strong. He can be mobilized, like you’re saying, but also due to the fuller nutrition, giving his body more to work with, to heal with. But now considering the multi myeloma and this lump that’s getting larger on his forehead, I would like to see that go down, of course. And I had heard, well, I had read that in Canada for decades, they have used flaxseed oil in combination with protein shakes or something of that nature for the uptake of the flaxseed oil. And that has had a beneficial effect on shrinking tumors, comparable to chemotherapy in some cases.
The 1:1 consulting session will continue in next week’s episode.
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This is Patrik Hutzel from INTENSIVECAREHOTLINE.COM and I’ll see you again next week with another update!
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