Where Do We Start in Weaning my Sister Off the Tracheostomy & Ventilator 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

Should I Sue the ICU Team for Medical Negligence Due to My Sister’s Severe Pressure Sores?

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 with a tracheostomy, on a ventilator, and has developed grade 4 pressure sores. Joyce is asking where to start in weaning her sister off the tracheostomy & ventilator in ICU.

Where Do We Start in Weaning my Sister Off the Tracheostomy & Ventilator in ICU?

“You can also check out previous 1:1 consulting and advocacy(7) sessions with me and Joyce here.”

Part 1

Joyce: Is this from the CT Brent? Is this the result from the CT?

Brent: Yes.

Joyce: Wait, they have-

Brent: She says … but the doctor called her and she told her that she probably has an infection from the wound most likely because she talked to the infectious doctor.

Joyce: And this they saw on the CT?

Brent: She will probably call you today or tomorrow to let you know.

Joyce: Doctor … okay.

Brent: But she’s starting antibiotics again.

Joyce: Okay, so I guess Patrik this is from the wound, and I guess they saw the infection through the CT. I don’t know if you can see an infection through a CT, but it’s that severe.

Patrik: Yeah.

Joyce: So..

Patrik: Have they surgically intervened with that wound?

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Joyce: They have debrided a couple of times, I think they did two debridement, they’re now … they had to debride it to where they finally, finally got a wound vac, only like maybe a couple of weeks ago, all this time they couldn’t because it was so severe. So as the tissue was starting to look nice and red, they were finally able to put a wound vac, and they … I will say this hospital has been giving her good care I would say because we’re always there, and I feel like the fingers is on the pulse, not like the other one that was a chop shop.

Joyce: So I feel like they’re doing the best they can.

Patrik: Sure, and like when you were … you know, you were just mentioning that they have surgically debrided, when was the last time they debrided?

Joyce: Probably like … weeks ago.

Patrik: Weeks ago.

Joyce: Three weeks … four weeks ago, like a while ago.

Patrik: Right.

Joyce: Three weeks ago.

Patrik: Because again, with her going to sub-acute, you know, they couldn’t surgically do anything in sub-acute.

Joyce: Listen I’m going to argue, right now it’s not on the table, but the argument will come in saying … listen Patrik I don’t know if someone will take her because it’s so severe. They are going to throw everything … but they’re not aggressive yet with us, they’re not aggressive, they kind of twinkled it in, but you know how case workers work, they’re going to try, but the doctor said they’re just twinkling it in but no one has aggressively like pissed us off yet, you know what I’m saying?

Joyce: So they’re just kind of like chiming in to get us ready, but right now she’s going back on antibiotics, there’s no way they’re moving her as long as she’s on antibiotics. So it’s a cat and mouse game, I’m going to play it as much as I can, but the wounds are really, really holding us back because we see promising … the ventilator is out, the mental status is out, but the wound is just … I don’t know what the endgame … what else should I advocate for?

Patrik: Yeah. There’s probably not much else you can advocate for. When you showed me your sister a minute ago, you know, I would argue one of the most important things that needs to happen, the pressure needs to be off the wounds. Are they doing that?

Joyce: Well they rotate/turn her. Brent let’s see again really quickly please. Turn the camera please. So she’s on the side if you can tell, she has a little bit of elevation of the pillow and they just keep putting like..

Patrik: It’s going to be very, very important to keep doing that on a regular basis, almost every-

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Joyce: I will say that they do … I will say that they have..

Brent: They’re actually very, very good with that, with turning her and doing it.

Patrik: Good.

Brent: They’re really good with that.

Patrik: Good.

Joyce: And we’re there Patrik, so we can really monitor her.

Patrik: Yeah. No that’s good to hear. Look those stage four pressure sores, I have seen them heal, but it takes ages. It takes ages. You know, and who is doing the dressings? Do they have a specialist wound care nurse?

Joyce: Yes, they have a special wound care and they … and every time we come-

Patrik: Good.

Brent: And only twice a week. He said only twice a week because it’s a lot to do, he has to be very, very skilled to be able to do that.

Joyce: Like an hour and 45 minutes.

Patrik: And it would be-

Joyce: And literally they come back sweating out of the room, like they’re really-

Patrik: Oh and it would be very exhausting for your sister because they have to turn her on her side and would be very draining.

Joyce: Very. Where are we at? Can you paint the picture? Because I’m like-

Patrik: I’ll tell you, okay-

Joyce: We want to celebrate but we don’t know … I mean look, I don’t know where we are because I’m so confused.

Patrik: Okay let’s just take the pressure sore aside for a moment, because that’s sort of … yes I am familiar with them, but I’m not a wound care nurse, right? But let’s just take the pressure sore aside for the moment. On a respiratory level I would aim to have that tracheostomy removed as quickly as possible, okay? Because going home without a trach will be so much easier. Okay.

Patrik: If the trach can’t be removed, home care is still possible, but it’s got to be diligently planned, and it’s got to be safe, right? That’s … as I said I can’t really talk about the wound, all I can say is yes I have seen them heal, but it takes weeks, months.

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Joyce: But my question to you is I mean I can get … listen, they won’t give us … I’ll tell you this, they won’t give us a respiratory specialist from the hospital, and they do not provide that, this is-

Patrik: What do you mean?

Joyce: The hospital will probably provide a wound care specialist, but they will not provide a respiratory specialist.

Patrik: Oh yeah, and again, that’s … no they won’t. Of course they won’t, because it’s-

Joyce: So what it would be is he gave me a number of an agency, the girl next door, and basically its $100 an hour and you basically grab them and you basically learn how to suction her, but you also hire a respiratory specialist.

Patrik: I can tell you the downfalls there straight away, I strongly disagree with that solution, I’ll give you my reasons why. So most of our clients here, we are providing 24-hour nursing care for either ventilation, tracheostomy, even if people only have a tracheostomy we provide 24-hour nursing care. So last year we had two clients that had a tracheostomy and were ventilated, we were only getting funding for night shifts, so daytime there was no ICU nurse there.

Patrik: We highlighted that from day one to the insurance and to the family saying look, we will provide the night shift of course, but your family member is at huge risk of dying during the day, and we didn’t sugarcoat that at all. The health fund was making assessments around our argument, both clients are dead now, dying during daytime, pretty much … the picture that we painted became a reality and we’re not making it up, we are professionals.

Joyce: Because they did not get suctioned or something happened?

Patrik: No medical emergencies, at the end of the day we don’t know how they died because we weren’t there, right? But what we do know is medical emergencies that couldn’t be managed by families, they called the ambulance but by the time the ambulance arrived it was too late. So I’m not making it up, hospitals have no idea-

Joyce: No I believe you.

Patrik: Hospitals have no idea about the community, you know they’re living in this safety bubble that you can create in the community as well, but it takes a different approach.

Joyce: Yeah. Okay so that’s … so unless we hire an ICU nurse 24/7.

Patrik: 24 hours a day.

Joyce: It’s really not an option?

Patrik: It’s not an option. Not an option. You know they can show you how to suction, sure, they could show you how to suction, but-

Joyce: But if there is a medical emergency.

Patrik: But what happens if you suction and all of a sudden there’s a bleed? And it happens. If you don’t know what you’re doing, your family member will slip through your hands in no time unfortunately, that’s the reality.

Joyce: So that’s really not an option?

Patrik: No it’s not an option. If you do that-

Joyce: To pay for an ICU nurse you’re talking about 60 grand..

Patrik: $100 an hour.

Joyce: That’s $2400 a day.

Patrik: Yeah, however, there is a business case in there for the insurance, because at the moment this is way more expensive for them at the moment, it’s more than $2400 a day for the health insurance at the moment. There’s a business case-

Joyce: No they’ll put her in a sub-acute. The argument is, “Oh we’ll put her in a sub-acute.” It’s..

Patrik: Yes you could use that argument, but we are finding, know, yes, even what we do in home care is more expensive than a facility, but it’s priceless having someone at home. It’s priceless, and..

Joyce: The question is how much help do we get because to pay-

Patrik: Yeah that’s right, and you need … look, Joyce, when I first started this business here, everybody would say, “Oh nobody will pay for it.” I was never worried about who’s paying for it, and don’t get me wrong, we don’t have clients paying privately, it’s coming through insurances, so there’s a business case, it’s definitely a business case.

Patrik: So whilst the healthcare sector here is slightly differently funded compared to other countries, there are a lot of similarities.

Joyce: Okay but that’s something … I mean for right now that’s not … I’m not picking up any big fish right now.

Patrik: No it’s not.

Joyce: Right now it’s not an issue anyway, but it will become, and I’m not-

Patrik: It will.

Joyce: I think what we’ll do is we’ll table this, we’re not there yet because she’s still staying at the hospital, so let’s do this, let’s table home care for a moment, let’s just … the last thing I want to ask you is what … how do I advocate for the trach? So they’re saying right now she needs the … we know because she desaturated like that, within a minute she went down to the 80s.

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Joyce: So that’s an indication that there’s a lot of secretions still? What is that an indication-

Patrik: No not … it probably does. What’s the size of the trach?

Joyce: They have not made it smaller yet, so-

Patrik: What size is it? Eight?

Joyce: I don’t know.

Patrik: Can you find out?

Joyce: Hold on. Brent?

Patrik: You don’t have to find out right now, but-

Joyce: I’ll text it. So, but they did tell me they’re going to go smaller and smaller.

Patrik: Yeah that would be ideal. The blood results look fine overall, but there is one caveat in that, the CO2 is high.

Joyce: It needs to go lower.

Patrik: Needs to go lower.

Joyce: So I call the doctor and I say to her how do we bring that number lower, and then you’re going to text me the machine-

Patrik: Correct.

Joyce: And I’m going to ask her about it, and then say, “What’s your solution of bringing down that number”?

Patrik: Yeah. Does your sister have asthma or COPD?

Joyce: Normally never.

Patrik: Yeah okay. No that’s good to know, because sometimes when patients have a history of asthma or COPD that number is 54 as a baseline.

Joyce: No she does not have.

Patrik: But your sister … okay yeah. Sure. Okay. Does your sister have sleep apnea?

Joyce: No.

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Patrik: Okay. Ask them whether they think now as part of her condition she might have sleep apnea.

Joyce: And why is that significant to us? Like why do I need to ask that?

Patrik: Yeah, so if she does have sleep apnea as part of her condition now, her CO2 would be elevated again as a baseline.

Joyce: And sleep apnea is a person who doesn’t sleep?

Patrik: No, not at all. It means they stop breathing during the sleep.

Joyce: Oh, but I don’t think so because the monitors would go off.

Patrik: Yeah probably not, but again, just to cover those bases, because if all of the answers are no, okay what else do they need to look at?

Joyce: And basically what you’re saying is in order to get a little bit more oxygen to the body, you would argue the fact that machine that you’re going to text me is one way, or another way is put her a little bit back on the ventilation? Because I would actually … I’m going to look back in my notes, and I’m going to see what that number was when she was on the ventilator, so if you’re saying-

Patrik: Yes please.

Joyce: So you’re saying if she’s on the ventilator, I can see that that number … actually I can see that now. Hold on I’m just..

Patrik: Yeah but bear in mind you’ve got to take into consideration how awake was she when that last gas was taken, you know, how awake was she when this gas was taken, so there’s a few variables. Other question, does she get a sleeping … a tranquilizer overnight?

Joyce: No and I really want them to. I really, really want them … the only thing they have is a norco, and sometimes I advocate for a norco and sometimes I don’t.

Patrik: What norco? Do you know what they’re giving?

Joyce: The norco is a painkiller.

Patrik: Yeah but that … okay no we’re getting to the bottom of things here. So if she has a sleeping tablet slash tranquilizer overnight, that in and of itself could be why her CO2 is high.

Joyce: But she’s not getting those.

Patrik: Okay number two, if she’s getting a norco like endone or oxycodone that could cause the high CO2 as well. So I do believe-

Joyce: But she doesn’t get it religiously.

Patrik: She gets it religiously?

Joyce: She does not … she doesn’t get it religiously.

Brent: I have a quick question. She’s just checked her sugar and she said its 69, isn’t that too low?

Patrik: A little bit low.

Joyce: Brent can you also ask her how big is the trach please? The size of it? When you have a chance.

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Patrik: Can you also very quickly show me the monitor. Very quickly, if there is a monitor. I’ll tell you why.

Brent: Okay.

Joyce: No not that one.

Patrik: No the one that’s next..

Joyce: Yeah.

Patrik: That one, yes.

Joyce: Go closer.

Brent: Can you see?

Patrik: A bit closer. Yeah no all good. I just wanted to see whether she’s got an arterial line, but she doesn’t. That’s all good. Thank you.

Joyce: But she’s breathing pretty fast, she’s breathing at 33.

Patrik: Yeah that’s a bit fast, and that’s why I think does she need to go back on the ventilator just to give her a little bit of a rest.

Brent: Should I tell them that?

Joyce: No.

Patrik: No they would work it out, but it is often. I hear your hesitancy, but sometimes it is two steps forward, one step back.

Joyce: I don’t want her back.

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Brent: Listen she’s exhausted, she’s never been this tired like I’ve seen her today.

Joyce: Well she went to the CT, she had like, you know.

Patrik: Okay.

Joyce: I don’t want her back on the-

Patrik: I know you don’t, but it’s a bit like if you’re training for a marathon, if you don’t rest a day, you can’t get your strength back.

Joyce: I feel like shouldn’t they advocate … I just don’t want to advocate … I don’t know, it’s like I just … I’m scared she’s going to get stuck there again.

Patrik: Oh for sure, but you don’t want to go to sub-acute, for sure, you definitely don’t.

Joyce: But Patrik that’s the problem, the problem is I don’t want to, but from what it seems like, I don’t know what the options are. If the sub-acute tells me, “Oh yeah, we could take care of the wound,” should I not trust them that they can take care of the wound?

Patrik: I wouldn’t … the wound would probably be not so much my concern, my concern is even though they’re advertising to be the specialist on trach and ventilation, they’re not.

Joyce: That’s why I wanted to get her off the ventilator, and that was one step closer. You know what I’m saying? You bought myself time.

Patrik: Yeah. No for sure. Look I hear you loud and clearly, but get her back … if she goes back on a ventilator for a night to give her a rest, and then she could do another five days, another week, that’s a win.

Joyce: You’re saying do that instead of a setback coming in?

Patrik: Oh definitely.

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

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