Hi it’s Patrik Hutzel from INTENSIVE CARE AT HOME where we provide tailor made solutions for long-term ventilated Adults & Children with Tracheostomies and where we also provide tailor made solutions for hospitals and Intensive Care Units whilst providing quality services for long-term ventilated patients and medically complex patients at home, including home TPN.
In last week’s blog, I talked about,
You can check out last week’s blog by clicking on the link below this video:
In today’s blog post, I want to answer a question from one of our clients and the question today is
Evidence-Based! Why Tracheostomy Clients at Home Need ICU/PICU Nurses 24/7! Live stream!
Good morning, good afternoon, good evening wherever you are. Welcome to another Intensive Care at Home Livestream. My name is Patrik Hutzel from Intensive Care at Home and the intensivecarehotline.com.
Today’s livestream is about “Evidence-based, why do tracheostomy clients, adults and children need ICU or pediatric ICU nurses 24-hours a day?” And you will learn all about that today.
Before I go into today’s topic, you may want to ask why, what makes me qualified to talk about today’s topic? I am an intensive care nurse by background, I’ve worked in intensive care for over 20 years in three different countries. I have worked with clients at Intensive Care at Home right from the start of my nursing career and also have set up Intensive Care at Home successfully here in Australia for the last 10 years. Worked with Intensive Care at Home in Germany as well. I worked as a nurse unit manager in intensive care for over five years.
So I have a broad variety in intensive care, but also Intensive Care at Home. And I will give you all the evidence today why a tracheostomy client at home, with or without ventilation, with or without mechanical ventilation needs an intensive care nurse 24-hours a day.
Some housekeeping issues. If you have any questions regarding today’s topic, type them into the chat pad below. If they’re not on today’s topic, you can still type them into the chat pad and I will get to them at the end of the presentation. If you have any other questions around intensive care or Intensive Care at Home, very happy to answer them today on this call. You can also dial into the show live and answer your questions on the phone live again at the end of today’s topic. So let’s dive right into it.
When we first started out with Intensive Care at Home, 20-25 years ago in Germany, we were clearly pioneering a new concept that was thought of as crazy and as not having legs to stand on. It was perceived as, you can’t take patients home from ICU. Well, we proved that concept pretty quickly in Germany and now 25 years later, it’s like an industry, it’s like a no-brainer that some patients in ICU, especially long-term ventilated patients with tracheostomy can go home if they have an ICU nurse 24-hours a day. Those ICU nurses need to have a minimum of two years ICU or pediatric ICU experience. That’s it in a nutshell.
Now, as time went by, people were formalizing that and put it in a research paper, which we published on our website at intensivecareathome.com. You will find a section there, the Mechanical Home Ventilation Guidelines . And it’s very important that similar to intensive care, that standards exist in the intensive care at home world, because what we are seeing is, and we’ve seen that way back when in Germany, but we are also seeing it now here. There are no standards, there is no lobby and it’s a bit like the Wild West.
And intensive care units can only feel safe to discharge their patients home if there are standards to avoid readmissions to predictably keep patients at home, and that can only happen with standards. It’s the same in hospitals in ICU that you can only operate with evidence-based approaches, and it’s not any different in the community that there need to be standards. So again, when you look at the evidence-based Mechanical Home Ventilation Guidelines on our website at intensivecareathome.com, you will find that those evidence-based guidelines clearly document that there needs to be an ICU nurse 24-hours a day. And those ICU nurses need to have a minimum of two years ICU experience, right? Makes perfect sense to me.
If a tracheostomy patient goes into hospital or into ICU, they wouldn’t have anything less but an ICU nurse looking after them, why should it be any different in the community? So we’re not going to wash down our standards in hospitals. Why would we water down our standards in the community, just because there is no lobby? Right? Healthcare is all about quality standards, right?
So, when we first started out here in Australia, again, similar to Germany 25 years ago, people thought we were crazy and it wouldn’t work. Intensive Care at Home, you can’t do that. It’s not working, no one will pay for it. And I heard all the naysayers, but that didn’t stop me to set it up anyway. And now 10 years down the line, we’ve provided hundreds of thousands of hours of Intensive Care at Home and we’ve proved the concept with our very first client by keeping them at home instead of them living in ICU.
And on top of that, obviously by doing so, we are saving the health system about half of the cost. Intensive Care at Home is about half of the cost of an ICU bed, which now is probably at around $6,000 per bed day, Intensive Care at Home probably is half of that. But you can’t even put a monetary value on what we are doing because our clients and our families, they want to be at home and you can’t put a monetary value on that if we can achieve that.
So when we first started out here in Australia, we also saw that other providers were trying to look after ventilated and tracheostomy clients at home, which in my mind, and I have a very strong opinion there, that’s a criminal act in my mind. And I feel very strongly about this and people might say, “Oh, this is not politically correct.” I don’t care if it’s not politically correct or not, in my mind, it’s a criminal act. If you have someone at home that’s looked after by a support worker or a general registered nurse. And I just leave it there, because you can’t negotiate on quality standards in healthcare.
You have the brain surgeon operating on the brain, you have the heart surgeon operating on the heart. You wouldn’t just pick anyone off the street. It’s like Qantas or any airline flying the airplane with a cabin crew instead of the pilot. It’s not any different with what we are doing at Intensive Care at Home. At the minute, you have support workers or general RNs without a minimum of two years ICU experience coming in. Clients are at risk of either dying or going back to hospital. Now, I can provide the evidence for that as well.
I knew of a client here in Melbourne, in maybe 2016. A child at home was looked after with a tracheostomy by support workers and general registered nurses and the client died. No surprises there because the airway got blocked with a seizures, a very complex child at the time. Airway got blocked with a seizure and the medical emergency could not be managed by a support worker or by the general RNs, and the child passed away. That could have been prevented with 24/7 ICU nurses, as the evidence-based Mechanical Home Ventilation Guidelines clearly document. And those guidelines again are a result of now over 25 years of Intensive Care at Home nursing in Germany and now over the last 10 years here in Australia.
Furthermore, we had three clients in 2020 with tracheostomies. Two of them were not ventilated, one of them was ventilated. All three clients did not have 24-hour nursing care. And when we were starting with those clients, we were only funded for either night shifts or we were funded for a visit twice a day for an hour. And we highlighted that to the funding body at the time, which is the NDIS (National Disability Insurance Scheme) here in Australia. And we clearly said to the NDIS, as well as we said it to the families that the minute we finish our shift and we can’t hand over to another ICU nurse, that their loved one’s life is at risk, and that we believe medical emergencies can’t be managed by families, by support workers or by general registered nurses without ICU experience.
Now, we were laughed at the time and we were told, “Oh yeah, you just want to promote your business. You don’t know what you’re talking about.”
And unfortunately, our predictions became a reality very quickly. All of those three clients that I’m referring to passed away during the daytime within a span of weeks, because medical emergency happened during the day that could not be managed by support workers, family members or general registered nurses. And the clients passed away before the ambulances even arrived.
Now, that’s incredibly tragic. Two out of the three clients were children. And a government agency like the NDIS wanted to save a buck instead of saving lives, and it’s just appalling. Now granted, even with what we are doing with intensive care nurses, the risk is fairly high. For us, we need to risk manage all day, every day. And we are taking a reasonably high risk, but we believe we can manage that because we have the skills and the attitude of our staff that can manage that, but you can’t be negotiating on minimum qualifications in this area. You just can’t.
And that’s basically what we’re doing. We’re trying to bring standards in the community for Intensive Care at Home, making sure that also like the NDIS for example, can deliver on the promises they’re putting out to their clients and their participants basically saying it’s about choice and control. Well if you can’t choose your skill level, you don’t have choice and control. And if you can’t choose your skill level, that’s clinically appropriate and evidence-based, clients’ lives are at risk. And clients can’t live independently, they can’t choose how to live their life and are at risk of dying.
And when you look at some other providers that might look after tracheostomy clients in the community, they do it without evidence. I can’t see anything on their websites that they have any evidence how they provide services, how they keep patients safe or clients safe, how they can manage tracheostomy if they’re not working with intensive care nurses. There are no standards, right? And they don’t even know the risk they’re taking. That’s my perspective, and again, we know from experience now that clients are dying if they don’t have the right care or they go back to ICU and nobody wants to go back to ICU, do they?
So it’s all about predictability at home. It’s all about making sure you’ve got the right skills at the right time. And also then from an NDIS perspective, you need to have the right funding in place to make it happen. And if you are watching this and you need funding as an NDIS participant or for one of your loved ones that isn’t NDIS participant or needs NDIS funding for a tracheostomy, you should be contacting us at intensivecareathome.com and we can point you in the right direction.
So that’s setting the scene I would hope. And again, it’s a win-win for everyone that we keep clients at home, we empty ICU beds, cutting the cost of an ICU bed by around half. We’re enabling clients to live at home surrounded by their families and independently. So it’s a win-win all together, and we are obviously enabling the NDIS to give their clients choice and control.
So with our team of highly skilled intensive care nurses, they all know how to look after tracheostomy. They have years of exposure in ICU, and some of our staff have worked with us for over five years now and they’ve had years of exposure to tracheostomy with us for many years at home. So they know what needs to be done. For some of our clients, we also do tracheostomy changes at home. We certainly do the dressing changes, inner cannula changes, make sure clients are getting the nebulizers. Some of them use a cough assist machine. So it’s a highly specialized skill.
And if you’re picking people off the street to deal with intensive care patients at home, which is what the NDIS wants to do or other funding bodies as well, it’s just a recipe for disaster. And if you’re not following evidence-based, it’s an absolute recipe for disaster. And I can only appeal to the NDIS in particular, not to ignore the evidence and not just look at the budget, but look at what people need clinically. If they go back to hospital, they would have an intensive care nurse full stop. Why would they not get an intensive care nurse at home? What’s the difference? What’s the difference?
Anyway, so that’s sort of the framework around it, and also, we have a quality manual where we have policies and procedures, how our nurses look after the tracheostomies and the ventilation at home so that it’s all within safe guidelines.
Now, so that is our area of expertise, it’s our strength. It’s unique that nobody else I believe is delivering evidence-based Intensive Care at Home or has accreditation like we do have. We have third party accreditation through the NDIS, as well as through ISO 9001 for Intensive Care at Home. It’s a unique intellectual property that we have built and I don’t believe that anybody else has been able to replicate that or has been able to achieve this accreditation, which we’ve achieved for the last 10 years every year.
So I hope that helps in understanding how we provide services and why we believe our clients are safe and why we believe we have the capacity and the skills to take people home from intensive care directly. We employ hundreds of years of ICU and pediatric ICU nursing experience. Again, I don’t think that any other organization is able to send that many years of ICU nursing experience in the community. It’s a unique value proposition that we have for our clients, for our families, but also for the NDIS and for hospitals and for doctors as well. So I hope that helps.
Now I am open now for questions. If there are any questions. Please type them into the chat pad now or you can also call in live on the show. You can call in if you are in Australia, you can call in on 0410942230. That is again Australia, 0410942230. If you are in the U.S. you can call 4159150090 that is again 4159150090. If you’re in the U.K. you can call on 01183243018. That is again 01183243018 or type your questions into the chat pad.
While I’m waiting for your questions or waiting for your phone calls, I will put a link below this video to the Mechanical Home Ventilation Guidelines. Now, what we are also doing at the moment is we are in the process to hire an NDIS specialist support coordinator that will help us advocate for our clients for the right funding. Because once again, we have found that some of our clients not getting the right funding keeps them in hospitals or in ICU for much longer. And if they then do go home with no funding for the ICU nurse, it puts them back into hospital, it puts their life at risk.
We know of so many clients beyond the clients that we’ve been involved with that have passed away at home because they didn’t have the ICU nurse 24-hours a day and it’s simply not safe. It costs life and it’s a very short term approach from the NDIS or from any other funding body, not acknowledging the intensive care nursing needs clients have at home to keep them at home safely. So there’s a caller coming in. I think that might be Helene, is that you?
Helene: Yes, Patrik, how are you?
Patrik: I’m really well, thank you. How are you?
Helene: I’m okay but I just wanted to take the opportunity to call. I was reading… Well, I just remembered that my mom, this was after she had… My late mother, had gotten out of the hospital, she had suffered hepatic encephalopathy, permanent brain injury while she was in the hospital, which the hospital tried to cover up. And I took her to a neurologist and he gave her a Xanax, one pill to have her to be calm while she went through getting a CAT (computerized axial tomography) scan.
Helene: And after she took the pill, it stayed in her system. I think it was done on I think August the 17th, August, September, August the 17th, and it stayed in her system that I had to rush her to the hospital, because she was not able to breathe the carbon dioxide out of her lungs. And I did not know how strong that pill was for her.
Patrik: What was the pill again, Helene? What was the pill again?
Helene: I think it’s a Xanax. Yes. He gave it to her so she’ll be calm and relaxed going through for the CAT scan of her brain. And it was given to her August the 17th and it stayed in her system, that I had to rush her to the hospital on the 19th. Because my mom stopped breathing or she was having heart failure. I don’t know what was going on. And fortunately, the caretaker was just coming to see her and she helped me with mom and we called 911 and the ambulance took her to the hospital and they had to put her on the BiPAP machine.
Helene: And fortunately that evening, she was able to come off of it, but they kept her in ICU overnight for observation. The unfortunate part about it, none of my mother’s doctors would talk to me. They put in the medical records that I was nowhere to be found, which was not true. I did get there later, but once I got there, I did ask to speak to the pulmonologist or the ER doctor, but neither would come and speak with me to let me know what was going on with my mom. And then the next day, they discharged her and it was an unsafe discharge, because I found out later, once I got the medical records, she had sepsis I believe. And she had something MRSA, I think she had MRSA.
Patrik: MRSA (Methicillin-resistant Staphylococcus aureus)?
Helene: Definitely had MRSA, MRSA. Yeah. And they had her on, what is it called? Fentanyl patches. And I’m learning more about how dangerous that pill can be where even people on the streets who take fentanyl, it’s hard for them to be weaned off. And my mother was 84-years-old. There was no way she could have been weaned off that patch. Where she had to get it… Had it replaced every 72 hours, and that’s the pill they gave… That’s the patch they gave her.
Helene: Remember when I told you about the misuse and overuse of the BiPAP machine? Where they had her on restraints and she tried to break a loose and chew a piece of the face mask that went around the mouth and the nose. Through the night, she chewed a piece of it off and it was blown down her throat and cut her throat or her esophagus and was bleeding, and they never retrieved it.
Helene: And they would not even do an incident report on it, then mom ended up getting septic shock in that hospital.
Helene: And also… I’m sorry, go ahead.
Patrik: Just maybe coming back to the Xanax, which is alprazolam, do you know how much she had of that drug? Have you got a dose?
Helene: It was just one pill. It was just one pill.
Patrik: Yeah, but it…
Helene: But she was…
Patrik: But it depends. One pill might be 5 mg, it might be 10 mg, it might be 20 mg.
Helene: It may have been 5 mg, but she had such a weak immune system at that point and she was very fragile. Very fragile. That pill was too strong for her.
Patrik: In combination with fentanyl, it almost sounds to me like they might have knocked her out.
Helene: It did knock her out. It did. And the carbon dioxide had gone back up in her lung again-
Helene: … like it did back in January the 7th from being given the wrong antibiotic for pneumonia. This doctor gave her Cefdinir antibiotic, I think it’s C-E-N-F-I-R versus Z-pack. And Cefdinir has the same chemical makeup as penicillin, and she was allergic to it, so she suffered allergic reaction. That’s how she ended up at this particular hospital, and from the carbon dioxide being built up in her lung.
Patrik: Too high.
Helene: And the doctor… Pardon?
Patrik: And the Alprazolam, just too, I don’t know what… The Xanax, I don’t know how much research you’ve done. It’s basically a tranquillizer.
Helene: Yeah, well, and like I said with the Fentanyl too that was just way too much. I mean, she had lost so much weight when she was in the hospital, and she was just frail. And she had gone through so much iatrogenic malfeasance abuse. It’s like she was always exploited. And like I shared with you when I first started talking to you, she was forced on the ventilator. It wasn’t some kind of injury or anything. I mean, the injuries happened during the hospital that put her on the ventilators.
Helene: And as I showed you, one of the doctors just excessively overload that caused her to have edema, congestive heart failure when she couldn’t breathe, and then giving her all kinds of narcotics, which they would not tell me what they were giving her. And it was affecting her lungs and she couldn’t breathe. So she was being medically exploited. And I saw this as a pattern from 2012, October the 1st of 2012, all the way to the time she died August the 27th of 2016. I saw this as a pattern at different hospitals.
Helene: And like you have said, the nurses that work with your company, they have at least two years’ experience. Where at this particular hospital where she was in, they had her on the BiPAP where she was over 72 hours no food, no water, no rest, and she was allegedly a diabetic. And I know you said you have to weigh the risk. But they were giving her excessively overload. And also the fact that she had a chronic arch that came as a medical injury back in 2012 and this was 2016.
Helene: And when COVID came out, that was the first time I really learned about what arch really was. And I was told that if you have somebody who has arch and you’re giving them excessive fluid overload and you’re blowing up that vent, it’s like air to their lungs. It’s like they’re hitting a brick wall. That’s quite a bit.
Patrik: Yeah. Yeah, absolutely.
Helene: And that’s what they were doing to her, and that’s why I said my mother was going through torture too. This was not the standard of care. This is not the… Like you were saying, there’s evidence-based when you have a stance and you have a standard and guidelines that you use at home. But at this hospital, it was like anything goes. It was like you mentioned, the wild, wild west, those were my exact words, what was happening to my mom.
Helene: It was just whatever went on, whatever they wanted to do, they did it. She ended up at the hospital for three months. August… I mean, it had to be January the 7th through March the 28th. And then there was an emergency appeal to get her out of there. And they got into LTACs who also concealed the damages. But before I go there to that hospital or that LTAC, they had nurses coming in that was still in nursing school working with patients in ICU like for visits.
Helene: I mean, I can understand nurses maybe touring an ICU but literally hands-on that will… And sometimes not even guided by someone else, oversight a training nurse. They were allowing that to happen. And some of them, other nurses who come from straight out of nursing school working-
Patrik: For sure.
Helene: … by themselves in ICU. And that just really-
Patrik: It’s dangerous.
Helene: … alarmed me.
Patrik: It’s dangerous. And this has always been-
Helene: Very dangerous.
Patrik: This has always been an issue in healthcare. How do you integrate junior staff, whether it’s doctors, nurses? You put them through training programs but you still have to learn on the job. And with COVID, that’s become worse, not better. It was challenging before COVID, where some of the staffing levels in ICU were pretty low with a lot of junior staff and it has become worse.
Helene: Yeah. And at this particular hospital Patrik, they had no standard, or sanitizing equipment, or hospital bed. I mean, they gave my mother a bed that a patient had just used. And my mother ended up getting hepatitis C in the hospital, as well as… Firstly, they did not wash it down or anything. And I’m like, “Aren’t you supposed to sanitize this thing before you put her on it?” “We don’t have the time.”
Helene: I mean, there was no standard. And you know the port to draw blood? The IV port when you’re supposed to wipe them down alcohol swabs and replace the top? They wouldn’t even have… This hospital didn’t even have the alcohol swabs to wipe those outside port. And I fortunately had some in my car that I just got a new shipment in as supply for my mom. And they had to use her personal supplies because I’m like, they had none. None. And then the green caps that they had supposed to screw on there to protect it, they wouldn’t even replace them at times. Either they leave it open or they kept reusing the old one.
Patrik: Yeah. Yeah. Helene, I’ve got another caller. I’ve got another caller wanting to ask some question. No, no, that’s okay. That’s okay. It’s all good. I’ve got to let another caller in. Thank you.
Patrik: Thank you so much for sharing your… I know it’s been very sad with your mom in particular. And I appreciate that you are sharing this so freely with everyone here, because I think it’s important that everyone is hearing it, that they need to be very vigilant while they have a family member in ICU. It’s that people have to be definitely as soon as they go in. Thanks Helene for sharing. I’ll just got to let another call later in. Thank you.
Patrik: Thank you. Bye-bye.
Helene: Thank you.
Patrik: So Traca, I’m just going to call you now. I know you tried to call.
Patrik: Hi Traca, it’s Patrik here. How are you?
Traca: Hi, I’m good Patrik.
Patrik: That’s good. You’re live now. Sorry that I couldn’t-
Traca: Oh, okay.
Patrik: Well, I’ve seen your emails, so I have an up to date. So update from your end. What’s your burning question now?
Traca: What I’m trying to find out, because my dad, they de-capped him on first on Tuesday and he hasn’t desatted or anything. They were actually going to decannulate him on Thursday, but he’s got mental confusion that’s developed now. So they felt that it was safe to still keep it in. But other than just the confusion part, he’s doing well and the LTAC wants to maybe discharge him on Tuesday. They wanted to go to a skilled nursing or a subacute facility. But my mom has home healthcare and so she wants to bring him home. So I was just trying to see what our next steps should be as far as safety, if they do decannulate him before we go home, if that was better or..?
Patrik: I think-
Traca: I’m not sure.
Patrik: Yeah, I think have a fairly simple answer for you there. Whilst confusion is not great, my advice would be to decannulate him while he’s in a hospital environment and see how he goes. Because he’s in the right place that if something was to go wrong, that they could recannulate him. But now is the time to decannulate him. When you say confused, can you describe that a little bit more?
Traca: Yeah, well, the last couple of days, he’s been confused and hallucinating saying there’s rats running around those ceiling and the vents are going to fall on me and people are crawling around on the floor.
Patrik: So but-
Traca: He’s more confused when you talk to him, he mumbles and just goes off on weird things.
Patrik: Okay. But he’s talking to you with the speaking valve?
Traca: Yes, he has a speaking cap on.
Patrik: Right. Fantastic. Fantastic. So as far as I can see, there’s way more positives than negatives. I mean, confusion is-
Traca: Yeah, we’re doing much better.
Patrik: Right, right. The most important thing from my perspective is you take out the trach, can he follow commands like can he keep coughing? Can he do deep breathing exercises? It doesn’t sound to me like that would be an obstacle or do you think that might be an obstacle that he can’t follow those instructions around breathing exercises, coughing?
Traca: No, he totally will do everything we ask him to do. He cooperates, understanding commands very good. I was just looking at the doctor’s notes that I just got and they have them as acute respiratory failure, and then it has N-S-P-W, which I’m not sure, but unspecified maybe, but it says hypoxia or hypercapnia.
Patrik: And did you say N-S-P-W?
Patrik: U-N-S-P-W. Never heard of that. I’ll just quickly type it into Google and see what comes up.
Patrik: Never heard of this.
Traca: I’m not sure.
Patrik: Medical. Interesting. But it sounds to me what he’s experiencing, nothing seems to come up. Nothing seems to come up.
Traca: Maybe UNSP W?
Patrik: P W? Yeah.
Traca: Yeah. P space. Yeah. I don’t know whether he has hypoxia or hypercapnia.
Patrik: Right. No, nothing comes up that’s of significance under that. That’s strange. But I think from what you’re describing here, the issues are not so much around the airway. The issue are more around mental like hallucination, confusion. Now correct me if you think I’m making the wrong suggestion here. Once he has the trach removed, him going home is something that can be achieved reasonably quickly, would you confirm that?
Patrik: Okay. So I argue that once he’s in his own environment, I would argue that the confusion will take care of itself, because how long has he been in hospital now? For months on end.
Traca: 106 days.
Patrik: Right, right. I would think that him going home would deal with that confusion, don’t you think? Or what’s your outlook?
Traca: Oh, I totally agree. Totally. But they’re trying to push now due to a convalescent skilled nursing or a subacute, and I keep explaining we’re not getting any better by just moving him around different facilities. That’s just creating his confusion to get worse.
Traca: And they haven’t done any physical therapy and it’s just frustrating. Because these facilities, they sell you all of this and say they’re great. And then you get in there and it’s totally the opposite. It’s like a used car salesman. So-
Traca: … that’s why we just decided we can bring him home. It’s going to probably be better.
Patrik: Now is the time. It sounds to me like you’ve got a unique window of opportunity here and I believe you need to capitalize on that. Let’s just quickly check another couple of things. He’s coughing?
Traca: Yes, he does cough and he’s coughing them up hard. And then a lot of times, he’ll just swallow it back down, but it’s going down the right tube.
Traca: He hasn’t been aspirating.
Patrik: Fantastic. The cannula is deflated? Do you know?
Traca: Yeah. Actually, what they had to do was they had to trach change to change his trach size because it was an XLT. Because they tried to cap him with the XLT and he couldn’t do it. So then they changed it from an eight to a seven and he’s been able to tolerate it much better since they made the trach smaller now.
Patrik: How long ago was it when they downsized it?
Traca: Last Sunday.
Patrik: Okay. So a week. Great. And he’s been tolerating that really well?
Traca: Yes. And then they totally capped him on Tuesday at 2:30 and he hasn’t had any need to have any oxygen, or no suctioning, or anything.
Patrik: Fantastic. Is he starting to eat and drink?
Traca: Yes, they removed the NG tube from him and he’s been on pureed foods, which he eats a lot of them, tried him on the mechanical, but he can’t tolerate the mechanical. He chews on it forever and then most of the time, he just spits it out.
Traca: So we’ve asked us to put the puree back.
Patrik: That is fantastic. I mean, it’s almost like now or never. I mean-
Traca: That’s what we thought too.
Patrik: That doesn’t make any sense that they would want to send him to another facility. And again, in my mind, that’s just as insane as leaving ICU, now sending… That just does not make any sense to me whatsoever.
Traca: Welcome to the United States.
Patrik: Our system here isn’t perfect either, don’t get me wrong. But that sounds-
Traca: So you’re suggesting that we try to get them to decannulate before we come home then?
Patrik: 100%. So here is what I’m suggesting. They should take the cannula out. He’s in the right place to have that monitored, right? God forbid it doesn’t go right. Well, he’s in the right place to have that rectified if it doesn’t go in the right direction. If it does go in the right direction, I’d say another 48, 72 hours max, go home.
Traca: Okay, so you’re thinking two to three days after we decannulate, then we should be good?
Patrik: Unless there is something else that we are not aware of. I did see his hemoglobin was a little bit low, but they wouldn’t transfuse him below a seven anyway, right? But again, stuff like I would imagine he’s not getting any natural daylight. When he’s back home, I would hope… I’m sure he’s getting some fresh air. And I think this is stuff that will take care of itself once he’s in a conducive environment.
Traca: Mm-hmm. Oh yeah, and he keeps saying that. And he’s seen my mom drive through the parking lot in his truck yesterday and he got all excited and wanted me to… Because I had him in the wheelchair, and then he wanted me to push him outside in the parking lot so he can get in the truck and go home.
Patrik: Look, I mean, obviously, that’s stuff that’s exciting for him. Going to another facility won’t be exciting for him.
Traca: Yeah, yeah. And they’re just wanting to push for that because of the physical therapy, because the LTAC has not given him any physical therapy. We’ve been there I think 25 days and he may have had four physical therapies.
Patrik: That’s shocking.
Traca: It’s horrible. We’re going on day 11 as of Monday of no physical therapy.
Patrik: That’s shocking. And where is he at in regards to his mobility? Where is he at?
Traca: The occupational therapist was able to get him to do a slide more from the bed to the wheelchair. It’s still difficult because he’s a very large man, but he was able to… His upper body is very strong. He’s been trying to stand when physical therapy did come in with the bars, the parallel bars. And the therapist obviously trying to hold him up. His lower legs are very, very weak.
Traca: His upper body’s very strong. So my brother and I and my mom constantly through the day, we’re working trying to do exercises with him, doing leg kicks and all that. We’re doing our own physical therapy. That was the other reason why we were like, we might as well just take him home, because we’re doing all of his bed care. The only thing we’re not doing is giving meds. We’re doing everything else.
Patrik: So the question is, do you feel confident taking him home and continue working on his physical rehab? That’s probably the question that you need to ask yourself. But I guess from a mental health point of view, he can’t wait to go home really, can he?
Traca: No, no. He is, that’s the number… And as far… My mom, like I said, has really good home health. They said that they will have physical therapy out two to three times a week. Occupation, either two to three times. It varies, but it would be more consistent to obviously what we’re getting. Plus, I have prior experience. My husband passed away seven years of gastric bypass due to malabsorption, which he was a very large man.
Traca: And so we had him at home and we took care of him until he passed. So we’re fairly well-known of how to take care of our large people and all of that. My mom’s really been working hard on the bed sores. They’re still really bad, but they’re nowhere as bad as what they were. The wound care nurse even told my mom, she just let my mom take over with the wound care because their stuff wasn’t working and my mom’s is. So she said, “Just keep doing it.” So we’re even doing the wound care.
Patrik: Sounds to me like you’re halfway there. I think the worst thing that you can do is by not capitalizing on what’s working. What’s working is it sounds to me like that trach is ready to come out. Is that other place that… Is the other place where he’s supposed to be going to, are they affiliated with this place?
Traca: No, they’re not affiliated. It’s just a different facility that they “can offer more physical therapy.” The LTAC he’s at right now, their specialty was weaning off the vent, which they did and weaning off the NG tube, which they did. But we also were promised physical therapy. We were promised after he left this LTAC that he would be strong enough and ready to go straight, discharged to home. But we found out that their physical therapy people all quit. So they don’t have a physical therapist.
Traca: So unfortunately, all these patients are laying there not getting physical therapy, because of their staff shortage, which isn’t our fault and it’s not theirs. But my dad’s the one that suffered. If we could have had the physical therapy going all this time, he would’ve been ready to be straight home probably being able to walk into the house. But I think we can do it.
Patrik: It sounds to me like if you’re not taking out the trach now, he would be going to a new team. It sounds to me like you’ve taken 2/3 of the journey and if you feel confident that you can take that last part of the journey at home without the trach obviously.
Patrik: Then I think you’re-
Traca: Because that’s a big thing.
Patrik: That’s the biggest one.
Traca: Now, if we had to bring him home with the trach, does that make things more complicated?
Patrik: Definitely. Definitely. I don’t know whether you saw the beginning of today’s presentation. I would be-
Traca: I missed it.
Patrik: Right, right. Today’s-
Traca: I’ll go back and watch it.
Patrik: Right. That’s okay. Today’s presentation was really about why someone at home with a trach needs 24 hour qualified nursing with ICU nurses. Because unfortunately, we’ve had patients die at home because they didn’t have the 24/7 with a critical care nurse, right? That was today’s presentation. So I think you are now in a unique position to get that trach out while he’s in the right place. They can take it out, monitor it for a couple of days, and then go home.
Traca: Okay, sounds good. Like a plan for me is the best news we’ve heard in 105 days that I’ve been through.
Patrik: It’s great. It’s great. I mean, that’s fantastic news.
Traca: All this hard work and all of your support and all of your nursing support, I can’t imagine how I’d get through it without you guys. And if I ever hear anyone that is ever in ICU, you will be the first person I tell they need to contact, because you guys have helped out so much. It’s just amazing. All of the secrets that they don’t want to tell you and how you can stand up to them and you can take them on. They don’t control you, you control them, all of that. I totally appreciate all of that.
Patrik: No, thank you so much for those kind words. That’s what we are here for. That’s all we want to do, we want to help people. Because I know it’s a terrible journey, it’s a terrible journey that no one should go through by themselves. Some people are able to manage it, but very few people are.
Traca: Yeah. Yep, exactly. Because well, they don’t know.
Patrik: That’s right.
Traca: They don’t know or they don’t have the encouragement to be able to take them head-on and know that they have that right. That’s the unfortunate people. Because I was able to help another person at the first hospital my dad was at that was starting to go through exact same things that we were, not letting him have a support person during the night and all that. And I emailed her my letters and I was like, these are civil and state laws. He can’t talk. You can be there for him. And so she gave it to them and the letter worked. So I told everybody, if my dad gets better, I’m going to be sitting in front of this across the street from that hospital. If anybody needs help, come see me. It’s just not fair. These hospitals, they have too much control.
Patrik: They have too much-
Traca: Many people are dying because of it.
Patrik: Yeah. Now this is fantastic news. I really hope that the hospital there now, or the LTAC will support you in your request in taking out the tube.
Traca: Okay, yeah.
Patrik: I think that should be your main focus.
Traca: Should we wait? Because they’re saying they want to wait to decannulate until his confusion gets better.
Traca: And should we… I mean, it has been, but-
Patrik: Look, is it riskier taking out a tracheostomy tube on someone that’s confused versus someone that’s not confused? The answer is probably yes, there is a higher risk. I would say especially overnight, right?
Patrik: When I worked in ICU, I have seen, you take a tube out during the day and everything is fine. And then overnight, there’s a higher chance that people might get confused overnight. It sounds to me like your dad is confused day and night. Yes, there is definitely a risk, but sounds to me like the risk of him going to another place now is probably higher than them not giving it a go.
Traca: Mm-hmm, yeah. And the other good thing too is I was able to fight against this hospital to allow my mom to get overnight stay. Because at first, they refused me and I kept on him and I kept on him. And then finally, they said, “Okay, fine, she can stay.” And ever since my mom’s been able to stay during the night, he does not need to be restrained. He hasn’t needed to be over-medicated. And that’s also helped a lot. So yeah, it’s a 24/7 definitely care. But I mean, we’re seeing progress and he’s doing great. So that’s the best news, like I said, since May 28th.
Patrik: Yeah. No, for sure. For sure. This is amazing news, but I really think, look, it is a higher risk of course. It would help if your dad wasn’t confused, but not trying… You got to weigh up, but it sounds to me like you’re halfway there, more than halfway there.
Traca: Yeah, I think so too. I think it’s time.
Patrik: I think it’s time. I’ll tell you what they may want to focus on. Let’s just say they take out the tube, maybe keep him nil by mouth for 24 hours. And that is hard because he’d probably feel very thirsty, but maybe manage that with some mouth swabs or with some crushed ice. But one of the biggest risks is probably aspiration risk in the first 24 hours.
Traca: Oh, okay.
Patrik: So that would be my recommendation, keep him nil by mouth for the first 24 hours. It’ll probably be hard for him.
Traca: Mm-hmm. Okay.
Patrik: Right? But you could manage that with maybe brushing his teeth, or using some mouth swabs, or some crushed ice so he doesn’t feel like he’s not getting anything at all. And I’m sure they have some recommendations there as well.
Traca: Yeah. Okay. All right, Patrik. Well, I look forward to keeping you updated and I can’t thank you enough and all of your nursing staff, everyone has been awesome.
Patrik: Oh, thank you so much. I really appreciate it.
Traca: I wish I could give you guys a big hug.
Patrik: I really appreciate sharing this and all the best, take those last steps. All the best. Thank you for sharing.
Traca: All right. Thank you, Patrik.
Patrik: Thank you. Thank you. Bye-bye. Bye.
All right. Thank you Helene and thank you Traca for contributing today. That’s been great.
So I’m going to wrap this up for today.
If you have a loved one in intensive care, go and check out intensivecarehotline.com. Call us on one of the numbers on the top of our website or send us an email to [email protected]. If you have a loved one in intensive care and you want to go home with Intensive Care At Home, contact us at intensivecareathome.com. Again, call us on one of the numbers on the top of our website or send us an email to [email protected].
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I will see you in another YouTube livestream next Sunday, 10:30 AM Sydney, Melbourne Time, which is 8:30 PM Eastern Time in the U.S. I look forward to seeing you then. Thank you so much and have a wonderful Saturday and Sunday.
Now, if you have a loved one in intensive care and you want to go home with our service intensive care at home and if you want to find out how to get funding for our service and how it all works, please contact us on one of the numbers on the top of our website, or send me an email to [email protected]. That’s Patrik, just with a K at the end.
Please also have a look at our case studies because there we highlight more about what we can do for clients, how clients can live at home with ventilation and tracheostomies and you can look at our case studies as well at our service section.
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Thank you for watching this video and thank you for tuning into this week’s blog.
This is Patrik from Intensive Care at Home and I’ll see you again next week in another update.