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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,

HOW LONG CAN YOU LIVE WITH A TRACHEOSTOMY? LIVE STREAM!

You can check out last week’s blog by clicking on the link below this video:

https://intensivecareathome.com/how-long-can-you-live-with-a-tracheostomy-live-stream/ 

In today’s blog post, I want to answer a question from one of our clients and the question today is

Ventilation, Tracheostomy, IV Fluids, TPN, Central lines, Dialysis. Can it be Done at Home? Live!

Welcome to the livestream of intensivecarehotline.com and intensivecareathome.com. My name is Patrik Hutzel from Intensive Care at Home and intensivecarehotline.com.

Today’s topic is “Ventilation, Tracheostomy, IV fluids, TPN, Central lines, PICC lines, Hickman’s lines, Port Catheters, Dialysis, Can it be Done at Home instead of Intensive Care?”

This is a question we get quite frequently and it’s time to shed some light on this question and help families to make decisions when they have a loved one in intensive care.

Before we dive right into it, let’s do a little bit of housekeeping. Before I get started, you might wonder what makes me qualified to talk about today’s topic.

Again, my name is Patrik Hutzel. I’m the founder and director of Intensive Care at Home, where we provide home care, specialized intensive home care nursing for predominantly long-term ventilated adults and children with tracheostomies as a genuine alternative to a long-term stay in intensive care. I’m also the founder and director of Intensive Care Hotline, where we provide a consulting and advocacy service for families in intensive care all around the world with Intensive Care at Home.

At the moment, we are predominantly providing services on the east coast in Australia, Brisbane, Sydney, Melbourne, but also the countryside of Victoria, countryside of New South Wales, countryside of Queensland, but we are also prepared to go into any other state within Australia at the moment.

Our services in Australia are mainly funded by the NDIS, by the National Disability Insurance Scheme, but also by the DVA, Department of Veteran Affairs, or by the TAC (Transport Accident Commission) in Victoria, or Icare in New South Wales, as well as NIIS (National Injury Insurance Scheme) in Queensland. So, that’s a little bit of background there.

I have worked in intensive care for over 20 years in three different countries. Out of those over 20 years, I have worked as a nurse unit manager in intensive care for over five years. I argue, I looked after thousands of critically ill patients in intensive care over the many years. I’m here to help you. I’m here to help you navigate the challenging issues that come with critical care and intensive care and having a family member in there.

Thanks for the welcome, Modema and Helene. Nice to see you again. It’s great to have you on these live streams on a regular basis. Thank you.

So, if you have any questions to today’s topic, in regards to today’s topic, please type them into the chat pad and I will get to them. If they’re off-topic, but still related to intensive care and critical care, please ask those questions and I will get to them after I’ve gone through today’s topic. You’re also welcome to dial in live on the show and ask your questions over the phone to the audience and to myself. We can do that, again, probably in about 30 minutes when I’ve gone through today’s topic. So, that’s all in terms of housekeeping.

I know we have people in the U.S. and Canada, as well as in the U.K. watching, especially when it comes to Intensive Care at Home as well. Unfortunately, we’re not in the U.S. and Canada or the U.K. yet with Intensive Care at Home. However, I still believe we can help you if you have questions around Intensive Care at Home, because we could potentially send you on or refer you to some services. They’re not quite as specialized as we are here, but there is still scope for some of the services in the U.S. to provide at least some of the services that we provide here in Australia. Same in the U.K., there are some smaller organizations that can help you with services such as Intensive Care at Home, even though they’re not as specialized as we are.

But to come back to today’s topic, again, ventilation, tracheostomy, IV fluids, TPN, central lines, or PICC lines, or Hickman’s lines, as well as dialysis, can it be done at home? Now, the short answer to this question is a yes. Yes, it can be done at home. The question is in what context and when, and what else needs to happen to do all these procedures and treatment options at home?

So, what we are doing here at the moment is pretty much we are taking patients out of intensive care that are otherwise would be confined to an intensive care bit for months, potentially years to come. That’s in a nutshell what we do with Intensive Care at Home. It’s done with 24-hour intensive care nursing at home overseen often by the hospitals. That’s what we do in a nutshell.

Now, that includes all of the treatment options or equipment that I just mentioned, ventilation, tracheostomy, IV fluids, TPN, central lines, not so much dialysis at the moment, but it can be done. What often happens with dialysis, some of our clients may have all of what I’ve just mentioned and they might go to a dialysis center two or three times a week and have the dialysis in a dialysis center. It’s not that we can’t do it at home, but it’s often their preference because they’ve been having it even before they had a service like Intensive Care at Home. Now, the other arena or area we are covering with Intensive Care at Home is BiPAP or CPAP ventilation without a tracheostomy. Again, often, it can only happen in intensive care only with intensive care nurses, so that’s part of what we do as well.

Now, I just had a comment this week, actually. I think it was the doctor that I was talking to and he said, “Oh, but most patients that need CPAP or BiPAP have sleep apnea.” He’s right. Most patients that have CPAP or BiPAP at home have sleep apnea, and that’s not what I’m referring to here. I’m referring to CPAP or BiPAP when patients have other chronic conditions, such as COPD, asthma, such as cerebral palsy or acquired brain injuries. There’s a multitude or a motor neurone disease. There’s a multitude of clients we are looking after at home on BiPAP or on CPAP or have looked after at home in the past on BiPAP and on CPAP without a tracheostomy and it still requires an intensive care nurse 24 hours a day.

Why? I’ll post a link below this video once it’s been uploaded. We are providing evidence-based services with Intensive Care at Home. So, what do I mean by that? On our website, intensivecareathome.com, you will find a section where it says Mechanical Home Ventilation Guidelines. Okay. When you look at the mechanical home ventilation guidelines, you will find that, (A) it is evidence-based, and I come to the evidence in a minute, (B) what does the evidence say? The evidence says that you can take a patient home from intensive care if they’re medically stable, but have still ventilation, tracheostomy, central lines, and BiPAP, CPAP, IV fluids, TPN if you have intensive care nurses with a minimum of two years ICU experience providing the services at home.

So, where is that coming from? Intensive Care at Home services have been around in mainly German-speaking countries in Europe since the late 1990s and those services have been around in those countries for the last 25 years. It’s an industry and it is an accepted practice that patients from intensive care, assuming they can’t be weaned off the ventilator and/or have a tracheostomy, can go home if there is an intensive care nurse there 24 hours a day, and those intensive care nurses have a minimum of two years ICU experience.

Now, the people that we employ, our wonderful ICU nursing team that works with our clients in the home, we employ hundreds of years of ICU nursing experience in our team. We have few staff that have only done couple of years, three years in ICU, but we have the vast majority of our nursing staff have done decades in ICU, which means we are employing, again, hundreds of years of ICU nursing experience. To bring that experience into the communities is unique. Imagine you’re taking all this experienced, senior ICU nurses into the community, you’re bringing in a completely different skill set that has never been seen in the community before and that brings innovation and brings change.

It brings change that is holistic, I believe. It’s family-driven. It’s family-centric. It gets people what they want. It gets everyone what they want, including ICUs and funding bodies. We’re cutting the cost of an ICU bed by half, but more importantly, we are giving our families what they want. I don’t think you can put a dollar figure on the services we are providing by keeping people out of ICU and by keeping families together more importantly. So, that’s sort of setting the scene a little bit here, but wherever you are, if you’re having issues with advocating for Intensive Care at Home services, if that’s what you want, you absolutely need to contact us so we can walk you through it, hold you by the hand and get the advocacy going because it’s all doable. It’s all possible. We wouldn’t be in business if the advocacy wasn’t working.

But coming back to ventilation, tracheostomy, IV fluids, TPN, central line, dialysis, what does it look like at home? Before I come to that, I probably need to go one step back quickly. We have a lot of inquiries from all over the world, really, where people ring up and they say, “Look, my mom, my dad, my spouse, my child has been in ICU for two days, and I want to take them home. They’re on a ventilator with a breathing tube, and I want to take them home.” Quite frankly, that’s too early, right? Your goal in intensive care should be to minimize your stay in intensive care and get your loved one to recover and get them to a hospital ward, no going home with a ventilator if you can avoid it.

We’re pretty much serving a niche market, meaning very few patients in ICU need our service, but still a growing number, especially with COVID. A lot of long-term ventilation has resulted out of COVID. But Intensive Care at Home is predominantly for long-term patients in intensive care. What’s a long-term patient? I would argue was there’s no defined criteria. From my experience after having worked in ICU for over 20 years, I would argue that in my mind, anyone above a month in ICU is a long-term patient.

Now, there is the exception to the rule. If someone inquires and says, “My mom’s in ICU for two days. Can we take her home?” There is the exception to that rule, but it’s not a good exception because we have, for example, looked at one-way extubations at home. I.e., when someone is having a one-way extubation in ICU, it’s often a palliative care/end of life situation. And then we take patients home for a one-way extubation with a goal of having palliative care or end of life care at home, and that is obviously when all parties have consented, when everyone is on the same page that end of life is the best way forward. That is probably the only exception to that rule, but you should not entertain Intensive Care at Home just after a few days in ICU. Your goal should absolutely be to get your loved one off a ventilator, avoid the tracheostomy, and get them onto a hospital ward and get them home. That should be your ultimate goal.

Don’t let the doom and gloom of the ICU teams discourage you from that because again, after having worked in ICU for over 20 years in three different countries, I know how negative ICUs are. It’s all about setting expectations. If they’re setting negative expectations, it’s much easier for them to sell you their agenda. I.e., if things don’t go well, it’s much easier for them to sell you on end of life, to sell you on the negative stuff. You have to read between the lines and you have to ask the right questions. If you’re not asking the right questions, you’ll be fighting an uphill battle.

The biggest challenge for families in intensive care is that they don’t know what they don’t know. They don’t know what to look for. They don’t know what questions to ask. They don’t know their rights, and they don’t know how to manage doctors and nurses in intensive care, and that’s the bottom line that unless you master all of these aspects, which is exactly what we can help you with here at Intensive Care at Home, but more so at Intensive Care Hotline with our consulting and advocacy service. Steering the territory of intensive care is incredibly challenging, but again, that’s our area of expertise, to help you with managing those challenges.

If you are thinking about having your loved one taken home after two days in intensive care, you probably don’t need Intensive Care at Home. You probably need someone that helps you understand how intensive care operates. What are your options? What are your rights? How can you avoid using Intensive Care at Home? How can you avoid a tracheostomy? How can you avoid not going to ward? Bear in mind, 90% of intensive care patients approximately survive intensive care. Okay. So, don’t let the doom and gloom from intensive care teams hold you back from being positive and from having a favorable outlook for your loved one when they’re in intensive care. You got to do the research. You can’t just take what the intensive care team says verbatim.

You have to do your own research and you have to talk to experts that can give you a different point of view and that are more objective compared to what ICU is telling you, because ICU is negative with every single family in ICU, and yet 90% of patients in intensive care survive, so very important for you to read between the lines. So, I hope that sets the scene a little bit, that only if your loved one can’t get out of intensive care, because they are ventilated. They have a tracheostomy. They might have IV fluids going. They might have TPN going. For anyone that doesn’t know what TPN is, TPN stands for total parenteral nutrition. It basically means intravenous nutrition for someone that has digestive issues, that has bowel issues and absorption issues. If a nasogastric tube or PEG tube is not an option and oral intake is not an option because of ventilation, tracheostomy or any other sort of gut issues, that’s where TPN is coming in. So that’s all possible and that’s all doable at home.

Yes. When should you consider intensive care done, which really after a couple of failed weaning attempts at home, that after a couple of failed weaning attempts in the hospital, in ICU, that’s when you should start considering Intensive Care at Home and look at home care, right? You should not be discouraged by ICUs. You should be taking matters in your own hands. You should be talking to us directly because we can then liaise and negotiate with ICUs directly as ICU professionals ourselves. We speak the language and we know what ICUs want.

We know how to go about funding in particular. You should not think that, “Oh, there won’t be any funding.” Well, again, especially if you are in Australia and now with the NDIS (National Disability Insurance Scheme), the funding is there. It just needs to be advocated for in the right ways with your support coordinator from the NDIS. If you don’t have a support coordinator, you should contact us. We can set you up with one, or we can help your support coordinator to steer the advocacy in the right direction. Often, what we are finding is that NDIS support coordinators are not health professions. They don’t even know what to advocate for. So it’s critical that you talk to us in those situations so we can help you take the steps in the right direction.

So then after that’s all sorted out in terms of funding, advocacy, then the next steps are once you’ve got the funding, then we can look at setting up a team for 24/7 intensive care nursing. Then we can look at setting up equipment. You also need to look at, is there modifications you need to do in your home? So yes, there is actually some work that needs to go in there. Not all homes need modifications, but some homes do. Again, we can help you with all of that. We can consult you on that level, because we’ve been setting up so many or we’ve been helping clients to set up their homes so many times, so we have a good idea what needs to happen in order to make a smooth and successful transition from ICU to a home care environment.

So, ventilation, tracheostomy, what do you need? You need a ventilator. We need two ventilators. You need a backup ventilator. You need spare tracheostomy. You need emergency equipment. But again, we know how to set all of that up. More importantly, you need a solid team. You need a team, 24 hours a day with intensive care nurses. For a 24-hour roster, similar to ICU, we know that we need a minimum of around 10 staff to cover for shortfalls, cover for sick leave, cover for annual leave, all of that. I understand it can be pretty daunting for families to have “strangers” coming to their home. It can be very daunting, no question about that, but it’s got to be done and it’s got to be done in the right way.

We understand how important it is for you and your family to have a say in the staff selection and making sure you have the right team coming to your home. But again, we have been creating many 24-hour rosters for our clients and we think we have a good idea of how we can work with clients successfully, involving them in the staff selection wherever we can so that you’ve got the right team in your own home because it is a very sensitive environment. We understand that.

You might be wondering how do you go about overseeing ventilation, tracheostomy, IV fluids, TPN, whatever the case may be? Again, discharging teams from hospitals are often overseeing the medical side of things. Again, if someone goes home with clear directions, with a care plan and then we can implement that on a day-by-day basis, again, in cooperation with you. The goal is to keep you at home wherever we can. That is the ultimate goal. We don’t want you or your family member to go back to ICU. That defeats the purpose of our service. So there need to be doctor’s orders. There need to be medication charts to facilitate the IV fluids, the TPN, the ventilation, tracheostomy, so that there’s no ambiguity of what actually needs to happen at home and we can work with clear guidelines.

By the same token, what’s very different in a home care environment is that you as a family have to say on how you want to structure your day. What else do you want to have done for your loved one? Do they want to go out? Can going out be facilitated? What does the night routine look like? The options, I believe, are endless. We’ve had some of our clients, whether adults or children… Children, for example, after we’ve taken them home from ICU, they went back to kindergarten or to school. Some of our adult clients went back to studying. They went back to university.

One of our clients has a job at a university as a lecturer, even though he’s on a ventilator with a tracheostomy. So, a lot more is possible than you think there is because ICU just sees it from a limited point of view. They have a patient in a bed space in ICU. That’s a very different approach, whereas we say, “Well, we have a client at home. What can we do with having them at home? What do we want to do? Can we make it happen?” It’s a very different approach.

Obviously, when it comes to IV fluids, TPN, central lines, there’s other things that need to happen as well. You need an IV pump. You need TPN bags. We need to liaise with companies like Baxter or Fresenius or at local pharmacy that can manufacture the TPN. I’m not affiliated with any of those organizations that I just mentioned. But yeah, Baxter or Fresenius, they’re companies that usually manufacture the TPN. We need doctor’s orders, of course, for IV fluids or for TPN. Also, there needs to be orders for what PEG (percutaneous endoscopic gastrotomy) feeds or PEJ (percutaneous endoscopic jejunostomy) feeds. There needs to be backup equipment for all of the things that I just mentioned.

Now, Traca says, “My dad has developed a mucus type area around the stoma of the tracheostomy that won’t suction. We constantly suction secretions from the stoma. Is this a sign of infection and not correct size of tracheostomy?” Traca, does your dad have a blocked tracheostomy or an unblocked tracheostomy? Do you know? Also, is your dad at home or is he in hospital? If you can share some light there, then I can take the next steps with you.

Also, one way to find out whether that is an infection or not is simply to send a sputum sample and get it tested for bacteria. If he’s in a hospital, they should be doing that automatically, especially if he has a temperature or other signs of infection, i.e., low blood pressure, high heart rate, temperature. Potentially, his white cell count is elevated when he has bloods taken. Potentially, CRP (C-Reactive Protein) is elevated. So please, if you can share more light, whether he’s got a blocked or an unblocked tracheostomy, and whether he’s in a hospital or whether he’s at home already.

While I’m waiting for your answer, let’s go back to the safety aspect and let’s also go back quickly to the Mechanical Home Ventilation Guidelines.

Again Traca says, ”He is at a hospital. He’s had a mucus plug last week. Saturation was 84 for 30 minutes.” Okay. Do you know, Traca, if he has a blocked cannula or an unblocked cannula, or the other term might be a cuffed cannula or an uncuffed cannula, do you know? Because I think that is important. And also, what’s the size? Not sure if it’s blocked or unblocked. Do you know the size? Okay. Quite frankly, Traca, ask the hospital whether he’s got a blocked or an unblocked cannula, simply a question of asking.

If it’s an uncuffed or an unblocked cannula, they might just simply have to put up the cuff to stop the leak. Okay. That’s number one, if he has an uncuffed tracheostomy, he might need a cuffed one or a blocked one. And then number three, I would really be curious what’s the size and would a different size make a difference, right? But it could be simply the size might be correct, but they may not have the cuff up. “They have a cuff. I know he’s had to have an extra-large due to his obesity.” Okay. Does your dad have a short neck? Because that could also potentially contribute to the mucus issue, but if you are worried about an infection, the hospital should simply send a sputum sample. Okay. That will tell them very quickly whether he’s got a chest infection or not.

Okay. “I know they change out a couple of times a day, but say they can’t inflate anymore.” Okay. If they can’t inflate, he probably needs a tracheostomy change. That sounds dangerous to me. Is he at an ICU at the moment, your dad, or is he on a hospital ward? Also, is he ventilated or not? Because that could make a difference as well. So, two more questions. Is he in ICU or is he on a hospital floor? It’s number one. Number two, is he ventilated or not? Yeah. Sure. I hear you. Tell me, is he in ICU and is he ventilated? Because that could make a difference too. Okay. While I’m waiting for your answer, Traca, let’s go back to the safety aspect at home and let’s go back to the mechanical home ventilation guidelines that clearly recommend… “No, regular floor, ventilation yes.” Right. Okay.

So, here is why this is important. So, if he’s in ICU, well, they should have all the expertise and staff there to look after tracheostomy and ventilator safely. If he’s ventilated and he’s gotten uncuffed tracheostomy or the cuff is down, there’s a very good chance there’s a leak. If there’s a leak, yes, of course, mucus will come out. Okay. Two solutions to that problem, (A) cuff up, stop the leak. If the cuff is up and it still leaks, he needs a bigger tracheostomy with the cuff most likely, simple as that. So, those are the questions you should be asking the hospital. So, if he’s on a regular floor, because now that I read your message again, it might also mean he’s on a regular floor. If he’s on a regular floor, he’s in danger zone, I would argue. Maybe just make it clear to me whether he’s in ICU or on a regular floor.

Okay. So next, brings me back to the safety aspect at home. ICU nurses are needed 24 hours a day, not support workers, not general registered nurses. If you don’t have ICU nurses 24 hours a day for ventilation and tracheostomy, for BiPAP ventilation, CPAP ventilation without a tracheostomy, if you don’t have ICU nurses 24 hours a day just for a tracheostomy, your loved one’s life is hanging at a thread. Let me repeat that because many families think they can just take the loved one’s home and provide care themselves so they can ask people off the street. If you do that, your loved one’s life is in severe danger.

I’ll give you some examples here. We’ve had some clients at home, where we were asked to do night shifts. Those clients either had a tracheostomy were not ventilated or were ventilated with the tracheostomy. We were only funded for the night shifts. There was a shortage of funding through the NDIS here in Australia. When we left the night shift, we said to the family, but we also highlighted this to the funding body that as soon as we leave this client’s life is at danger and we were referring back to the mechanical home ventilation guidelines that clearly say, “You need ICU nurses 24 hours a day. Those ICU nurses need to have a minimum of two years ICU nursing experience. If that is not guaranteed, clients’ lives are at risk.”

Lo and behold, those clients have passed away during the day when we were not there because either families, support workers, or even general registered nurses without ICU experience could not manage a medical emergency relating to the tracheostomy or the ventilator. That’s how severe this is. We’re not making it up. It’s a reality. So, talk to us about the safety aspect, how can you obtain the funding for 24-hour intensive care nursing at home so we can safely take your loved one at home and work with them?. So, same applies to TPN at home, for example.

So, Traca, you’re saying, “No, regular floor. You said to ask for cuff up to stop the leak and what needs to be bigger?” The tracheostomy needs to be bigger. Let’s just say for argument’s sake he’s got a size 7 trach tube. He might need a size 8. He might need a size seven and a half, eight and a half. You got to work out what size of tracheostomy he has to begin with. “We are trying to get him home on ICU care, but he’s fighting pneumonia because nasogastric tube got out in his lungs.” Oh, my goodness. Does he have a PEG tube? “Should I fight to get him back to ICU?” Traca, I would say yes, you should fight to get him back to ICU, but help me understand where are you. Are you in the U.S.? Are you in Australia? Are you in the U.K.? Help me understand where are you.

If you can share with me your location, then I can hopefully point you… Yeah. Where are you? Can you share your location, Traca? Are you in the U.S., in Canada? Are you in Australia? Are you in the U.K.? Where are you? And then I can hopefully point you in the right direction. “In the U.S., in California.” Okay. Traca, I’ve seen there was a missed call from California. Is that you that tried to call? Do you want to dial in on the show? I can call you back if you like. If that was you, let me know and I can call you back and we can hop on the call here, if you like. We can discuss things in more detail, if you don’t mind other people listening in. Just let me know if that was you.

So, Traca, it wasn’t you. Okay. All right. Fine. But Traca, if you are in California and is on a regular hospital floor, I would argue you should try and get him back into ICU, especially if you’re thinking they’re mismanaging him. Help me understand why is he on a ventilator with tracheostomy and how long ago did he leave ICU? Help me understand. Okay. So let me talk about TPN before I get back to you, Traca, after you’ve answered my questions.

So TPN can be done at home, need intensive care nurses to access central line, PICC line, Hickman’s line and manage the TPN safely, making sure there’s no line infection, making sure that when the TPN is running, that there is no air going into the veins. There’s also issues around checking sugars, checking electrolytes, such as potassium, magnesium regularly, which again can be done from the PICC line. That can be drawn easily. So, that’s the situation with TPN. IV fluids, again, can be done, same access, central line, PICC line, Hickman’s line, sometimes also a peripheral cannula, which should be changed every three days. With central lines, PICC lines, Hickman’s line, they often can stay in four weeks, potentially months on end, potentially up to 12 months sometimes. So, they don’t need to be changed on a regular basis because home care really needs to be set up in a way that you’re minimizing the risk of going back into ICU.

Okay. Let’s open the floor now. We’re answering questions already, but if you want to dial into the show now and you want to ask your questions live, you can do so. If you’re in the U.S., you can dial 415-915-0090. That is again for our U.S. and Canadian audience. You can dial in now, 415-915-0090. If you are in the U.K., you can dial 011-8324-3018. That is, again, 011-8324-3018. If you’re in Australia, you can dial in now on 041-094-223O. That is again 041-094-223O.

Now, Traca, you’re saying, “64 days in hospital, 55 days in ICU, cardiac arrest, no brain damage or organ damage, pure negligence at the hospital, ended up on dialysis from medicine so they did the tracheostomy.” Oh, my goodness. Sounds horrible. Why did he leave ICU? Why did he leave ICU and what are they saying are the next steps? Also, if you are in California, we haven’t found anyone in California yet that is able to help families to go home on a ventilator. I’m not aware that there are any specialized services in California that offer any similar type of service than we are providing here with Intensive Care at Home. I’m not aware of it. It doesn’t mean it doesn’t exist, but I think I would’ve come across in all these years doing this work. I do believe that I would’ve come across because I’m talking to people in California, New York, all around the U.S. almost every day. I just haven’t come across everyone.

“They felt he was stable and want to send him to LTAC.” What’s stopping them from sending him to LTAC? What’s stopping them? So, you see, from what you’re sharing with me, Traca, if you were here in Australia, I would say your dad is definitely a candidate for going home, 100% a candidate for going home, 100%. Also, I should say, just for our Australian viewers here, if you have a loved one in ICU that’s older than 65, the NDIS stops funding patients above the age of 65. If that is the case, again, you should talk to us. We should then go back to the Department of Health in your respective state. We often have access funding through the Department of Health as well. So you should absolutely contact us irrespective of your loved one’s age.

So, they felt he was stable. Okay. So, you stopped them from sending him to LTAC. Well, good for you. Good for you. You’ve probably read my blogs and watched some of my videos that you understand that LTACs are not a safe place to send someone on a ventilator. He probably should still be an ICU, but I do believe a regular floor in the hospital is probably still better than LTAC. So, I hope that helps, Traca, in terms of what your next steps are. And Traca says, “He’s 64. Right. Okay. Yeah.”

Another thing that would be important to know is that, what’s his ventilator setting? What is he on? How realistic is it for him to be weaned off the ventilator in the next few weeks? As I said in the beginning, you should only be considering things like Intensive Care at Home when someone can’t come off the ventilator. “Needs suctioning at least three to five times a day. He’s 74.” Is that his age, 74? Yeah. He needs three to five times a day, per hour suctioning. Yeah. Yeah, I get that. Oh, three to five times per hour suctioning, that’s a lot, or three to five times a day. Anyway, as long as he needs suctioning and he can’t cough, his cough is not strong enough, he probably needs a tracheostomy, at least even if he could be weaned off the ventilator.

Okay. Look, I do want to wrap this up slowly today. Please keep firing your questions away if you have any more questions. I will do another YouTube live next week around the same time, 10:30 AM on a Sunday Sydney, Melbourne time, 8:30 PM Eastern Standard Time in the U.S. on a Saturday night. I think it’s 1:30 AM in the UK in Sunday morning, not a good time, I know, but those live streams will be uploaded on YouTube and you can watch them retrospectively. You can leave your comments and questions below, or you can simply contact us on the numbers on the top of our website. There’s a phone call coming in.

Patrik: Patrik speaking.

Helene: Hi Patrik. I’m Helene Webster. How are you?

Patrik: Very well, thank you. How are you, Helene?

Helene: I am okay. Glad to be here with you this evening. I have a question. You had mentioned about the central line, be aware of infections.

Patrik: Yes.

Helene: Well, I wanted to bring up something my late mother experienced or should I say suffered. Her doctors were given her excessive propofol and this was not to get her prepared for the ventilator. They used it to force her on the ventilator. She ended up having, it seems like, chemical burns. She got an infection, but chemical burns, because once the IV, I mean, I’m sorry, once the central line she got was removed and they wanted to insert it back in the same artery, they couldn’t, it was blocked, so it seemed like… They wouldn’t explain to me why it was blocked. Well, if you have a scar, what is it? Pink keloid or something, when something is burnt or you have a cut and it doesn’t heal, it has like a little… Like the skin pops up or something. There was something wrong where they could not get the central line back through that same artery. They had to go to the other artery to put a central line in. Do you understand what I’m saying?

Patrik: I think I do understand what you’re saying. I just need to make a comment here that a central line is sitting in the vein, not in the artery. There is a difference.

Helene: Okay. Okay. Yeah. It went through her neck. They had to insert it through her neck.

Patrik: Yeah. That is a central line, but it would be sitting in a vein, not in an artery.

Helene: Oh, okay. Oh, okay. Well, there was a lot they weren’t telling me. Okay. So, it’s in a vein. Okay. But have you heard or experienced or witness what I just described, where the vein obviously was damaged from… Because I think my mother must had allergic reaction from the propofol. They were giving her massive lethal amounts of it. I mean, it was ridiculous. They didn’t even tell me what it was. The best way I could describe was a white milk substance. When I asked the nurse, “What was this?” He said, “It’s the same medicine that was given to Michael Jackson that ended his life.”

Patrik: Correct.

Helene: I said, “Why was my mom prescribed this and who prescribed it?” and he would not tell me. He just said, “Well, she’s fine. We’re monitoring it.” And that was it.

Patrik: When she-

Helene: I asked her for it to be discontinued. Go ahead. I’m sorry.

Patrik: When she had the propofol, did she already have the tracheostomy or was she still on a breathing tube?

Helene: At that time, she was on a breathing tube.

Patrik: Okay. So, let me explain why patients have propofol when they’re on a breathing tube, but not when they’re having a tracheostomy. So when patients are having a breathing tube in ICU, I would say that at least half of patients on a breathing tube in ICU are on propofol as a sedative so that patients can tolerate the breathing tube because it’s so uncomfortable. The minute that patients have a tracheostomy or get extubated, they no longer need propofol most of the time, certainly not when they’re extubated, because if someone is extubated and they’re having propofol, that could lead to a respiratory arrest, which is exactly what happened with Michael Jackson, right?

Helene: Say that last part again. I’m sorry. Yeah. You said what? Say that last sentence again. I missed that.

Patrik: Yeah. Patients should only have propofol if their airway is stable, i.e., when they have a breathing tube or an endotracheal tube. If patients have propofol while they are spontaneously breathing, it could lead to a respiratory arrest, which is exactly what happened to Michael Jackson. His family doctor prescribed him propofol at home from what I understand, but he was not ventilated. I.e., every time he took the propofol, he was at risk of stopping breathing, which is what eventually happened.

Helene: Okay. Well, then, let me ask you this, is it normal for it to be back to back? I mean, isn’t there a certain limit? Can it be… What I mean…

Patrik: Yep. Great question. Yep.

Helene: I mean, can it be lethal? Is there a point where it can be considered a lethal amount?

Patrik: Oh, there’s certainly is. Let’s just take maybe a child. Let’s just say a ventilated child needs propofol. You wouldn’t give a ventilated child the same amount of propofol than you would give an adult, right? So, in that sense, yes, there could absolutely be a lethal dose. I don’t know where that lethal dose is, but for an adult, I don’t think I’ve seen much more than maybe 250 milligrams an hour, which is massive, don’t get me wrong, but what needs to happen then? Let’s just say an adult needs a massive propofol dose to keep them comfortable and what’s being referred to as tube tolerant. So they can tolerate the breathing tube. If the propofol needs to go up to manage that, then often another sedative needs to come in because the propofol is not working. So that’s when the sedative needs to change often from propofol to midazolam or Versed.

Helene: Okay.

Patrik: So propofol is a short-term acting sedative, whereas midazolam or Versed always said is a long-term acting sedatives. Sedative, generally speaking, you need smaller amounts to achieve the same outcome.

Helene: Okay. What about the part when I had mentioned, I believe she had allergic reaction from it that caused chemical burn. All right. I mean, I’m not in the medical field. I don’t know all the clinical terms. I’m just describing it the best way I know how in a layman’s terms.

Patrik: Yep.

Helene: I met someone who was given propofol for a certain procedure and it was just probably one dose and it literally burned her. Her veins, it was burning. And so, they let me know it could be a chemical… It’s like the chemical burn that’s in the vein. So that’s what I believe happened to my mom, because they had to pull it out. They had to remove it and tried to put another one in, because I think she had suffered an infection and they could not go back in that same vein so they had to put it… They went from… I think it’s the most common side. It’s the right side first and then the left. Which one is the most common side?

Patrik: The most common ones are the jugular vein or the subclavian vein. The jugular vein sits around here and the subclavian vein sits around here. Okay. So, it doesn’t really-

Helene: I can’t see you because I’m on the phone with you.

Patrik: Yeah. Okay. Fair enough. Fair enough.

Helene: Okay. Right side or the left side?

Patrik: No, it doesn’t matter, right or left. Doesn’t matter right or left.

Helene: Oh, okay.

Patrik: It’s more about whether it’s the jugular or the subclavian vein or even the femoral vein, which is in the groin.

Helene: Okay. It wasn’t in the groin. It was definitely something in the neck.

Patrik: Sure. Sure. Yeah. So, the subclavian vein sits right underneath the jaw and on the left or in the right. The subclavian vein basically sits just underneath the shoulder, left or right. Okay. But to answer your question, have I seen patients being allergic to propofol? I haven’t, but that doesn’t mean it doesn’t exist. Okay.

Helene: Yes.

Patrik: And then also, with the chemical burns, again, if they gave a ridiculously high dose, could it happen? Well, absolutely could happen. Haven’t seen it, but again, I guess the question could also be, is it the propofol or is it… When someone is having a central line, there’s often multiple medications going in through the central line. Could the chemical burn be from a combination of medications going in there? What else did you have? That’s more the question that I would probably be asking with what you’ve shared with me.

Helene: Yeah, I agree with you. That was going to be my next question, because that was the other things that concerned me. I think there was something that was so alarming to me. They were using the propofol central line as well to use as well as to put medication also down that same central line. So yeah, that was my other concern.

Patrik: And there is more to it. There is more to it, Helene. For example, a central line, most central lines in ICU need to be changed every seven days, otherwise it’s an infection risk. Now, there are now some long-term central lines that you can keep in for longer than seven days. But again, the central line is similar to a ventilator, should be a short-term measure, ideally. So I’m asking, did this all happen after seven days? Should that central line have been changed potentially five days before this happened? I think those are all questions that are relevant to the situation.

Helene: I did notice that, Patrik, because I know every time when they would… I think I know that between changing it, well, I’m sorry, they had to sanitize it or something. I remember this particular nurse at times would not use, whatever, the squeeze, and it comes out like a little padding somewhere to wipe, to clean around that site.

Patrik: Yep. Yes, an alcohol swab, an alcohol wipe.

Helene: Yes. There were times he would not do that. He would miss that step because the packaging that comes in was all sterilized.

Patrik: Yep.

Helene: I made a report against him for not following through all the protocols because I always observed things. That’s how I learned what was normally being done. When something was off, I would bring it to their attention. There was a lot of foul plays going on concerning my mom. I didn’t get to tell you this, but back this past May, I learned that that hospital has been closed.

Patrik: Wow.

Helene: There are no more… Yeah.

Patrik: Wow.

Helene: The hospital was closed down. They are reviving it just to be like, I think, a clinic, urgent care clinic or something like that. But yes, there was so much egregious medical care going on. It wasn’t funny. Also, you had mentioned about you all being able to prescribe, I mean, to provide IV fluid. When there’s an order for IV fluid, this ordering doctor, should they put how many bags or how much when it should start, when it should stop, as well as if it should be bolus or et cetera? Should that be a part of the order?

Patrik: 100%. All of it. All of it.

Helene: I think those things weren’t done for my mom. It was like, you remember, I shared with you how my mother was forced on the ventilator. There were things that was being done and that was one of the main vehicles they used, excessive fluid overload, that will infiltrate her lungs, that will cause non-fatal drowning so they can get her on the vent, as well as using opiates that caused her slow breathing. I mean, it was a lot of foul play going on, but I just wanted to get that clarity from you, but I don’t want to take up all your time in case somebody else want to call, but thank you so much.

Patrik: No, it’s a pleasure. It’s a pleasure. Nice to talk to you again, Helene. I’ll talk to you next time.

Helene: Thank you. Okay. Bye-bye.

Patrik: Thank you. Bye. Bye.

All right. So, before I wrap this up, if there are any other questions, please type them in the chat pad or call me on one of the numbers that I shared before, then give this video a thumbs up. Share it with your friends and families. Subscribe to my YouTube channel for regular updates for families in intensive care. Leave your comments below. If you want to, click the notification bell also.

Next week, I will do another YouTube live around the same time, 10:30 AM on a Sunday Sydney, Melbourne time, 8:30 PM on a Saturday Eastern Standard Time in the U.S., 5:30 PM. Pacific Time in the U.S. Next week’s topic is my 21-year-old daughter died at home on a ventilator and tracheostomy. Was it preventable? So that’s next week’s topic.

I do offer one-to-one consulting and advocacy for families in intensive care as well. We’ll put a link below this video. We also have a membership for families in intensive care at intensivecaresupport.org. We also offer medical records reviews for our clients in ICU or once they’ve gone, once they’ve left ICU.

If you have a loved one in intensive care, you want to go home, especially with ventilation, tracheostomy, TPN, IV fluids, central lines, Hickman’s line, PICC lines, dialysis, please contact us again. If you’re in Australia, funding is available through the NDIS. You should be contacting us around the funding options, but even if you’re in the U.S., you should contact us. We can help you, guide you and go from there.

Traca, “How do I convince them to get him back to ICU?” I would need to know more about your dad’s situation and I would need to either talk to the doctors directly what’s exactly happening. The devil is in the detail. There’s definitely a clinical argument just by him being on a ventilator. That in and of itself should be enough, but there’s probably more to it. I would need to know the details. It’s really when someone is in ICU or ventilator, tracheostomy, you’d need to do a head-to-toe assessment. It would be valuable to look at medical records. Ideally, look at medical records and talk to the doctors or nurses directly, then I can really guide you with this.

Traca, if you want to, you can just send me an email to [email protected], or you can call me after the show on 415-915-0090. That is again for our U.S. audience, 415-915-0090, or you can schedule an appointment with me. If you go to our website intensivecareathome.com or intensivecarehotline.com, there’s a section on the top of the website where it says schedule appointment, and you can schedule a time with me there.

Thanks for watching.

We are at the hour mark now. I need to wrap this up. I really appreciate your support and your questions, and I’ll talk to you again next week around the same time. Have a good week and take care. All the best.

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.

Intensive care at home Case studies

And if you are at home already and you need support for your critically ill loved one at home, and you have insufficient support or insufficient funding, please contact us as well. We can help you with all of that.

And if you are an intensive care nurse or a pediatric intensive care nurse with a minimum of two years, ICU or pediatric ICU experience, and you ideally have a critical care certificate, please contact us as well. Check out our career section on our website. We are currently hiring ICU and pediatric ICU nurses for clients in the Melbourne metropolitan area, Northern suburbs, Sunbury, Bendigo, Mornington Peninsula, Bittern, Patterson Lakes, Frankston area, South Gippsland, Drouin, Warragul, Trida, Trafalgar and Moe as well as Wollongong in New South Wales.

www.intensivecareathome.com/careers

So we are also an NDIS, TAC (Victoria) and DVA (Department of Veteran affairs) approved community service provider in Australia. Also have a look at our range of full service provisions.

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.