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 Will Be the Life Ahead of My 6-month-old Niece with 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 Joyce, as part of my 1:1 consulting and advocacy service! Joyce’s sister is still on a ventilator, with a chest tube & now with a big pressure sore. Joyce asks if the pressure sore is due to her sister not being mobilized.
My Sister Has a Big Pressure Sore & Is It Because She’s Not Being Mobilized by the ICU Team?
Patrik: Hi Joyce. How are you?
Joyce: Hi Patrik, I’m good. Thank you!
Joyce: Okay Patrik, to update you.. They did a move threatening me to go sub-acute which she was nowhere near. Long story short, they did a lot of things. I didn’t feel safe, so they finally brought me back to my home hospital, which is a huge place, like an HMO kind of thing. But they’re a huge hospital and they’re … It’s a like a whole different ballgame. I was at first very scared to do that, but at the end of the day, I think it was a blessing because every week, she has a different team.
Joyce: There’s several different doctors with different angles. They’re a lot more corporate. It’s not like these small hospitals with these independent doctors. These doctors are working for this huge network, so a much better thing. The pulmonologist who said, “She will never go down on these settings.” She went dramatically down on her settings. She went from 40 to 30. I sent you the-
Patrik: Yes, I saw that. Yup.
Joyce: The latest thing was today, this spontaneous, so I wanted to just … Even though I feel like I have a good grip on the doctors there, I don’t feel like shady and I don’t feel like I need to check up on them, what did happen last week though, we had to have one chest tube in to take out fluid and air, and then the other one collapsed. So, she had another chest tube. Now, she has two chest tubes. That happened on Friday. Ever since the two chest tubes happened, she actually was able to tolerate spontaneous breathing better, and that’s why she was able to go where she’s at.
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Patrik: Her bed sores are very, very extensive. I hear that like, I guess, they are really, really bad. Bad to the point where it’s like, down to the bone. I don’t know if there was a botched surgery from the other hospital. We said we got to go in there. They got to take the fluid and they’re going to put the wound VAC.
Patrik: Got to put a what?
Joyce: A wound VAC.
Patrik: Oh, a wound VAC. Okay. Yeah, sure. I know what a wound VAC is. Yes.
Joyce: But they never did it, because I don’t think they were able to do it. I think it was so extensive. I have not seen them. I don’t want to see them. But they keep on bringing up the bed sore saying they’re very, very extensive.
Patrik: So, can you visit?
Joyce: I’ve been visiting. So now, they’ve been allowing us half-an-hour visits every day.
Patrik: Okay, good.
Joyce: At the hospital, which is over the moon. We kept breaking in and I think they just gave up. They’re like, “We can’t control these people.”
Patrik: Good.
Joyce: Now, we get a half-an-hour visit with my sister. I actually have her on Face time which I’ll connect just so you can see her. I still have the iPad running. But I just wanted to speak to you … Again, I feel like we’re in a better place. We’re still in the hospital. She’s getting a long-term antibiotic because she was still running a really, really bad fever last week like constant fevers. They also thought she had an infection in her heart, they think but they’re not sure. They weren’t going to do the microscopic thing to see her heart. They said, “We’re just going to treat it like she has it,” and it’s a long course antibiotic for a couple of weeks. I don’t know exactly what this whole thing. The bed sores are a huge issue. She’s lost a tremendous amount of weight. She’s literally now skins and bones. But mentally, she is able to respond to us. She says yes or no, very alert, squeezes my hand. She squeezes my hand.
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Patrik: Fantastic.
Joyce: I showed a photo … Actually, let me see if I can log in just so you can see.
Patrik: Fantastic.
Joyce: Yeah, she’s totally 100% there. Hold on. You guys, I’m just showing Patrik the … Here you go. Hold on. Here you go, Patrik. Can you see my sister?
Patrik: Yes. Wow, I can see.
Joyce: She looks relaxed. She still has …
Patrik: But only her arm.
Joyce: She has a lot of stuff in her arms. It was actually very purple the other day. I think I have to find out about the rectum tube that keeps coming out. It’s bothering with the bed sores. I keep getting mixed review. Every pulmonologist says something different. Last pulmonologist was starting to give me that talk of like, “Blah, blah, blah. What would she want?” I have this religious doctor who actually prays for her every day. Once I get her, she’s completely different. You know what I’m saying? Every week, I get a different taste of somebody. I’m just kind of filling you in because it’s 102 days of every day … Literally, there’s not been a day that we’re all over this case. I just wanted to know what her setting even though they don’t have time to really go into it with me, so I want to use you as just kind of fill in the blanks of where I need to learn.
Patrik: The setting is minimum. My next question is why can’t she get off the ventilator? That’s my next question. What’s stopping … Has she had time off the ventilator, on a tracheostomy collar? Do you know what I mean?
Joyce: She has trach collar right now. She has a trach collar.
Patrik: Okay. But the picture you sent me, she’s on a ventilator.
Joyce: Yes, I know. She’s on a ventilator. I guess what they’re doing is, look, last week, two weeks ago, she was so bad. She was running an infection. She didn’t tolerate spontaneous breathing even for five minutes. She could not tolerate it at all. Actually, when the other lung collapsed, they did spontaneous breathing for almost eight hours, but with one lung collapsed. Since she’s had the chest tubes in, she’s been doing better. She literally just got the chest tubes on Friday. But she started the spontaneous breathing trial as of today with a lower setting. I wanted you to paint a picture to tell me where I really am because I can learn. We’ve learned a lot with that thing, but tell me where I’m at.
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Patrik: Yeah, yeah. Okay. When I look at those ventilator settings, she’s on minimal support. If your sister is breathing on that for 24 hours or more, they should be taking her off the ventilator and see whether she can breathe with a trach collar. It sounds like that is happening.
Joyce: She’s still on it all day.
Patrik: Now, this is not … The picture you sent me, she’s on a ventilator.
Joyce: No, no, no. She’s on a ventilator. But I’m saying, she’s on this setting since the morning.
Patrik: Yup. If she’s still on that setting tomorrow morning, she should be on a trach collar. Do you know what I mean?
Joyce: What’s a trach collar? No. I know she has the trach collar. But it’s connected to a ventilator.
Patrik: No, no, no. Basically, what they should be doing tomorrow morning if she still is on those settings, they should be taking her off the ventilator, give her humidified air or humidified oxygen, and let her breathe on her own completely, and see what happens.
Joyce: Because I’ll tell you, I think it’s so new. I mean, look. Last two weeks, she was miserable. I didn’t think she’s going to make it. Honest to God, I thought this was the end.
Patrik: Why did she have the chest tube, pleural effusion?
Joyce: What does that mean? She had the chest tube because they took an x-ray and they saw a lot of air around the lung.
Patrik: Oh, air. So, a pneumothorax.
Joyce: Yes, yes. They took it out and they also drained a tremendous amount of fluid on one lung. Then, the other lung they saw a tiny, little air. Then, all of a sudden, the next day collapsed. It turned into a big thing. So, within four days of each other, she had one tube and another tube. I trust them in a sense that I think she’s been through so much. Today was the first day that she actually looks calm. So, Patrik, as far as her mental status, let me just tell you. You know we’ve been through the wringer. She’s able to nod yes. She’s able to nod no.
Joyce: She’s able to squeeze a hand on command, “Sis, squeeze my hand.” We keep asking her, “Do you remember if I came yesterday?” She’ll say, “No,” but we’re there and she acknowledges us. I brought her old photos, she smiled. She tries to mouth a little bit. I don’t know what she’s trying to say. But I completely do conversations with her. Can we assume, well I feel like she’s there. I can look at her eyes and-
Patrik: If she’s squeezing your hands if you ask her to, you don’t … If you come out of a coma, if you get to squeeze your hands, that’s fantastic.
Joyce: She was squeezing my dad’s hand all the day today. It’s funny because she won’t do it for the doctor, because the doctor was in the room.
Patrik: When you wake patients up out of an induced coma, the first question you ask them is, can you squeeze my hands? If you get that, you know someone’s there. That’s all you want.
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Joyce: She’s there. I look her in the eyes, she knows it’s me. At least, I think it is. I don’t know. I’m asking your point of view because I don’t want to make up a story.
Patrik: No, you’re not making a story, no.
Joyce: I know she knows me. Actually, my husband came for the first time. I said, “Do you want to see my husband?” She said, “Yes.” I bring in the kids, she actually even tried to blow a kiss.
Patrik: Right. Great.
Joyce: Yeah, right. So, mentally she’s there. She’s got COVID, obviously. They keep saying that the lungs are still really bad. My question is can we still get out of this? Now, the quick physical … They keep asking for her physical therapy and they keep canceling. They bring it in and then, the therapist keeps canceling saying that the nurse could do range of motion, but they don’t have time for it. I’m going to keep fighting for the physical therapy to bring back on.
Patrik: Is your sister getting mobilized?
Joyce: No.
Patrik: Why not?
Joyce: What do you mean mobilized like taking her out of bed?
Patrik: Yes.
Joyce: Never.
Patrik: Terrible, terrible.
Joyce: I don’t know if it’s because of the bed sores, I don’t know if she’s not … Look, she cannot move. She literally just lays there. So, the range of motion because she can’t participate, physical therapy cancels it and they said, “We’re not going to do it if they don’t participate.” But I’m trying to get the range of motion back on. So, I’m going to fight with them to put it back on and then, they’ll cancel it. What else can I do? Tell me what else I am missing.
Patrik: Okay. When you showed me your sister a minute ago, without knowing your sister, I can see that she’s lost weight. I mean, I can see that without knowing your sister just looking at her face.
Joyce: Yeah.
Patrik: But basically, what you’re telling me, she’s been lying there for the last 102 days.
Joyce: Yup.
Patrik: What are you missing? You’re not missing anything besides, she needs to get going physical therapy range of motion. I do believe she needs to get mobilized rather sooner than later. Now-
Joyce: I don’t know how they’re going to do it. Listen, Patrik. You’re an expert and you’re a lot more aggressive, I think but these hospitals are not trained … Look, I’d rather be in a hospital than anywhere else, right?
Patrik: Sure.
Joyce: But I’m going to drain my time to get her off the ventilator at least in the hospital setting and then, figure out the next move.
Patrik: Yes, is she in an ICU or in an LTAC? Where is she?
Joyce: No, she’s not in LTAC. She’s in a full hospital and she’s in a step-down from an ICU.
Patrik: Like a step-down, okay.
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Joyce: She’s in a full hospital. So, I feel good at where I’m at as far as like, you know? I have great doc … much better than the other place.
Patrik: What are the next steps from the hospital’s perspective?
Joyce: No one has spoken to me about anything. Right now, they’re on the long term antibiotics and because the wounds are so extensive, that’s hard to stay because I’m going to argue the fact that you cannot send them anywhere without these wounds to think … If the hospital’s having a hard time taking care of them, I will see another place taking care of these really, really, really nasty down-to-the-bone wound. It’s bad. I guess, it’s tremendous.
Patrik: Have you seen the wounds yourself?
Joyce: She offered for me to see it. She offered me to see her to kind of try to convince me to stop treatment, I think. He said, “You should really see your sister’s wounds because if you saw them, you would know what she’s facing and I don’t think you … “Basically saying like, “I don’t see this going anywhere.”
Patrik: Where are the wounds? Where are they?
Joyce: There’s right above the buttocks. I guess it goes really, really deep. I guess, there’s two right on the butt cheeks, around that area. I guess, they’re really big, really nasty. I don’t know if the other surgeon messed up and really just did something really, like dug in there or she just dug in there and cleaned it up. I really don’t know. But the other surgeon in the other hospital said, “You got to do it. Otherwise, it’s going to go to the bones.” So, I did it. I said, “What am I going to do?” But they’re bad.
Patrik: Yeah, for sure.
Joyce: She got really skinny at this place, at this hospital. I keep asking her, “Are you feeding her or not?” They said, “We’re feeding her around the clock. We’re feeding her around her needs.” I said, “Can you just pump her with food?” They said, “It doesn’t work that way. She’s burning off the calories because she’s working so hard.” But she’s so skinny. She’s so skinny. So skinny. My question is, other than … Let me just write this down. I know my place but I still want to know. So, fight for physical therapy no matter what.
Patrik: No matter what. No matter what. I mean, the pressure sore has happened now. There’s no turning back. But they should never happen in the first place, never. But that’s beside the point now.
Joyce: Do you think the other place has not moved her around enough?
Patrik: Oh, big time. Big time. I mean, I believe you have a case there for potentially medical negligence if the pressure sores.
Joyce: Oh, that’s what somebody else told me, how do you even go after them? They feel like they’re so protected.
Patrik: Look, if you for example get the medical records and you get a professional to look at the medical records when you give it a lawyer, I believe you have a very good case of medical..
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Joyce: They have taken pictures. They would have documents. Would they be in liberty to show me?
Patrik: They have to or whoever is the medical power of attorney. It might be your parents. But you have every right to review the medical records whenever you want to.
Joyce: If it’s a different hospital, is this something you think I should go … This is separate from the hospital now, but how would I even-
Patrik: Protect them? Don’t over complicate it. Ring them up and say you want your sister’s medical records. End of story.
Joyce: So, I can call them and say, “I want all the medical records.” I’ve never seen one.
Patrik: Absolutely.
Joyce: Then, I want including pictures and everything. Then, I can have you maybe look at it.
Patrik: We do it all the time. We do that all the time, review medical records, all the time.
Joyce: But let me ask you a question. How would you stop negligence?
Patrik: The first we would want to know from you is what questions do you want us to have answered and, you know-
Joyce: I want to know about the bed sores.
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Patrik: That’s right. You want to know about the bed sores. So, we would look at what’s documented about bed sores. For example, is it documented that evidence-based pressure area care has been done. Evidence-based pressure care is a turn every two to three hours.
Joyce: Let’s say it’s ordered and how do you know it gets done?
Patrik: Often, there’s two ways. As a nurse, you either document in your progress notes, “I’ve turned the patient every three hours,” or what they often have, they have the care plans and they tick boxes, pressure area care, done. Let’s just say, it’s not ticked for a few consecutive days, well what happened? You could also argue that if it is ticked and your sister still has pressure sores, what have they done?
Joyce: You really think we can find that? Look, she was in the ICU for, you know, you saw me from the beginning of this. I don’t know what they did in the ICU. We weren’t there. You know what I’m saying? I don’t even know how much they even moved her. I think they probably didn’t move her for 45 to 50 days.
Patrik: They would’ve moved her in bed. They would’ve turned her, washed her back but probably not often enough.
The 1:1 consulting session will continue in next week’s episode.
How can you become the best advocate for your critically ill loved one, make informed decisions, get peace of mind, control, power and influence quickly, whilst your loved one is critically ill in Intensive Care?
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- How to ask the doctors and the nurses the right questions
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- How you need to manage doctors and nurses in Intensive Care (it’s not what you think)
Thank you for tuning into this week’s YOUR QUESTIONS ANSWERED episode and I’ll see you again in another update next week!
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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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