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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.
You can click on this YouTube link to watch the video for today’s blog post:
In last week’s blog, I talked about,
CAN I TAKE MY WIFE HOME FROM INTENSIVE CARE WITH VENTILATION, TRACHEOSTOMY AND TPN? LIVE STREAM!
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
My Wife’s on a Ventilator at Night Only Due to Sleep Apnea & Tracheostomy During the Day, I Want Her Home!
Welcome to another Intensive Care at Home and intensivecarehotline.com livestream. My name is Patrik Hutzel from Intensive Care at Home and Intensive Care Hotline and I want to welcome you to another livestream today.
Today’s topic is, “My wife is on a ventilator at night only due to sleep apnea and tracheostomy during the day. I want her home.” And what this gentleman is saying that his wife is in ICU, of course is in intensive care, and I will elaborate on this situation. I will elaborate more importantly on the options for this gentleman and his wife, and I want to do a deep dive there.
Now, before we go into that, you may wonder what makes me qualified to talk about today’s topic. Again, my name is Patrik Hutzel. I’m running an organization Intensive Care at Home. With Intensive Care at Home, we are sending intensive care nurses into the home predominantly for long-term ventilated children with tracheostomies, but also adults and children that are on BIPAP or on CPAP ventilation, also known as non-invasive ventilation. We’re also looking after some clients at home that are not necessarily on ventilators and tracheostomy, but that still need an intensive care nurse, 24 hours a day, because otherwise they would be in intensive care because of their medical complexities.
Furthermore, we are also providing home TPN”, also known as total parenteral nutrition, also known as intravenous nutrition. So, we are offering these services in order to enable patients and their families to leave intensive care and go home and improve their quality of life. I am a critical care nurse by background. I have worked in intensive care for over 20 years in three different countries. I have worked as a nurse unit manager in intensive care for over five years and I have been running Intensive Care at Home for nearly 10 years now. And we are serving a large number of clients, predominantly in Melbourne, Sydney, Brisbane, Adelaide, Perth in Australia. But we are also helping families in other countries to get home. You should contact us whether you are in Australia, in the U.S. or in the U.K., you should contact us. We can help you one way or another.
I’m also the founder of intensivecarehotline.com. At intensivecarehotline.com, we are helping families in intensive care with consulting and advocacy. We help them to steer the difficult territory that is intensive care. When they have a loved one there, we help them to ask the right questions. We help them with their rights, so they know what their rights are. Most families in intensive care have no ideas about their rights. They don’t even know that they have rights. They don’t even know they exist because hospitals try and exert their will and pretend, they’re operating in a vacuum. But nothing could be further from the truth. They’re not operating in a vacuum. You have rights, you just need to know about them, and you need to exercise them. And that’s what we have families with at intensivecarehotline.com, but we also help them to ask the right questions. We help them to evaluate medical records, we help them to interpret medical information. We talk to doctors and nurses directly and we do that as part of Intensive Care at Home as well.
Now, if you have any questions today, just type them into the chat pad. If you have any comments, type them into the chat pad. I will also give you the opportunity to dial into the show later if you want to ask any questions live on the show, over the phone. I will give out those phone numbers at the end of today’s topic as well and you can talk to me live on this show.
Without further ado, let’s dive into today’s topic, “My wife is on a ventilator in ICU overnight only because she’s got sleep apnea and she’s got a tracheostomy during the day. Can I take her home?” And the short answer to that is yes, you can take her home with a service like Intensive Care at Home because it sounds to me like the sleep apnea issue was probably there before your wife went into intensive care.
Now, I know from your emails that your wife had a severe pneumonia and couldn’t come off the ventilator with complications after COVID, so you have shared more of your wife’s history. So, I do know that the sleep apnea was there before she went into ICU with the pneumonia and now it’s a case of that she still needs the BIPAP overnight, but that she’s just on the tracheostomy during the day without ventilation support.
So, for any of you watching, what needs to happen if someone is in intensive care for months on end because your wife has been in intensive care now for three months, what needs to happen if someone is in intensive care for months on end and they can’t move forward, which is the case in this situation. So, what needs to happen in a situation like that is really voicing your desire about your wife wanting to leave intensive care and you voicing your desire to the intensive care team that you want your home and obviously reaching out to us, which is what you’ve done, and therefore we can help you with setting up Intensive Care at Home.
So, the first thing that needs to happen obviously is to determine that your wife at this stage can’t come off the ventilator, which sounds to me like is what’s happened because your wife was on CPAP before she went into ICU for sleep apnea, but obviously without the tracheostomy. Now, obviously she got a tracheostomy now and the BIPAP is delivered via tracheostomy overnight, but she does still have the tracheostomy during the day and she’s not in a position at the moment to have the tracheostomy removed because she’s on too much support overnight. So, again, and her CO2 (carbon dioxide) is still on the high side.
So, what should happen next? What should happen next really is your wife going home on a ventilator with a tracheostomy and you’ve shared that your wife is 57 years of age, which would enable her to qualify for NDIS (National Disability Insurance Scheme) funding here in Australia. Anyone below the age of 65 is able to have NDIS funding for situations like that and we can help you with that. Or if you are an NDIS support coordinator, you should contact us as well. Most NDIS support coordinators are non-clinical, and they don’t really understand that for someone on a ventilator with the tracheostomy, in order to get them home, it requires intensive care nurses, 24 hours a day. And if you look at Mechanical Home Ventilation Guidelines that we have published on our website, the evidence-based mechanical home ventilation guidelines that we have published on our website, intensivecareathome.com, you will see that as per evidence, only intensive care nurses with a minimum of two years ICU experience can look after ventilated and tracheostomy patients at home safely.
So therefore, in this situation, your wife needs a team of intensive care nurses, 24 hours a day, to enable her to go home from intensive care. And that’s what we are here to help you with. We create the team for you, we hire the team for you, obviously in consultation with you, and that’s what we are here to do. Once you’ve got the funding, and again, we can help you with the funding, we can help you with the advocacy, we can do a nursing assessment for you, we can help you with getting all the medical evidence, which is not difficult, and then it needs to go to the NDIS or to any other funding bodies if it’s a private health insurance.
In some cases, you may contact us, and you may say, “Hey, my loved one has private health fund or private health insurance,” and then we can help you with getting the evidence to the private health insurance or sometimes the evidence needs to go to the Department of Health. For example, if your loved one was above 65 years of age, the NDIS won’t pay. But if your loved one is above 65 years of age, then often the Department of Health pays. But again, they’re looking for the clinical evidence why your loved one needs an intensive care nurse at home, 24 hours a day, instead of staying in ICU. And again, we’ve done this numerous times, otherwise we wouldn’t be in business. We have helped countless families to achieve that goal.
Now, next. So once the evidence has been gathered, funding has been approved, then we need to look at your home and it doesn’t need a lot of modification most of the time, sometimes needs a little bit of modification, but a lot more is possible at home than you think there is. And we can guide you without what you need for a home set up, but it’s much less complicated than you think it is. We often provide services in homes that are not necessarily modified, and we can adapt to smaller houses as well. But again, this would require an in-depth or a more in-depth discussion so we can have a look and guide you with what needs to happen in that home care setting.
Now, coming back to the mechanical home ventilation guidelines, as I said, for someone to safely leave intensive care, you need a minimum of two years ICU experience at home with intensive care nurses, you need a team of intensive care nurses, which is what we are there to hire for you. And we employ hundreds of years of ICU nursing experience at home, and we employ a team, again, of hundreds of years of intensive care nursing experience. I don’t think there’s any other organization worldwide that has more intensive care nursing experience in the community than we have at Intensive Care at Home. So, you’ll be in very safe hands here to get your loved one home from intensive care.
So, what could happen if you don’t have an intensive care nurse, 24 hours a day, at home for ventilation with tracheostomy? So, let’s just run through this because unfortunately, we have seen this. If someone on a ventilator or with a tracheostomy, and they don’t necessarily need to be ventilated, even if they “only have a tracheostomy,” they still need an intensive care nurse, 24 hours a day, with those intensive care nurses need to have a minimum of two years intensive care nursing experience.
What happens if that’s not the case? Well, what happens is patients die, and I need to put it that bluntly because we have seen it over and over again where funding bodies, for example, only make funding available for night shifts and then clients on a tracheostomy or with a ventilator are left out an intensive care nurse during the day. And we had three clients passed away in 2020 where funding was not made available during the daytime. And just as we predicted at the time, those clients passed away during the day because the NDIS didn’t want to fund daytime despite overwhelming medical evidence.
So, that’s negligent from the NDIS and I would think that anybody that’s watching this that’s affiliated with the NDIS would not want to repeat that exercise and potentially be seen as murdering people. And those are strong words that I’m using, I’m well aware of that, but that’s what it is because the medical evidence is there. Again, look at the mechanical home ventilation guidelines. You can look at doctor’s letters, you can look at nursing assessments. The evidence is overwhelming that someone on a ventilator with a tracheostomy needs intensive care nurses, 24 hours a day, full stop. And if the NDIS is not responding to medical evidence, then that’s negligent and the NDIS needs to take responsibility for being negligent and potentially killing people.
I hope someone from the NDIS is watching here today and takes note of what I’m saying because we are seeing that on the NDIS level. Funding decisions are often being made from people that have no clinical background, that have no idea about tracheostomy ventilation, never set a foot into ICU, never been in a nursing home or in a hospital working there as health professionals. So, they’re making very random and arbitrary decisions that cost people’s lives.
Moving along, again, and even if you’re watching this and you have a loved one at home already on a ventilator with a tracheostomy, but you are fearing now that your loved one’s life is at risk, you should contact us as well. We can help you one way or another here at Intensive Care at Home.
So next, especially with the tracheostomy during the daytime, it needs frequent suctioning, also needs frequent suctioning overnight probably while your wife is on the BIPAP. It needs regular maintenance, i.e., dressings need to be changed regularly, at least twice a day, inner cannulas need to be changed. You did say that your wife has an inner cannula, so inner cannulas need to be changed regularly. If you don’t change them, a sputum plug can happen and can lead to a medical emergency, potentially including death of a patient if people don’t know what they’re doing with an inner cannula for the tracheostomy. This is again where the expertise comes in of intensive care nurses with a minimum of two years intensive care nursing experience. It’s critical to have that experience.
Next, nebulizers often need to be given, whether it’s saline nebulizers, whether it’s Ventolin nebulizers, Atrovent nebulizers. When someone is on a ventilator with a tracheostomy, the tracheostomy needs to stay patent. The tracheostomy can dry out pretty quickly if there’s no humidification and no nebulizers being given. If you’re not changing dressings regularly, there’s an infection risk. The devil is in the detail there. Also, when you connect someone to a ventilator at night, again, you need to read the ventilator settings hourly. You need to be able to interpret ventilator settings. You need to be able to look at tidal volumes. You need to be able to look at pressures in order to troubleshoot if ventilation is running smoothly. You need to be able to interpret whether tidal volumes and oxygen saturation correlate. If one or the other is high or low, what’s the trend? Again, this is where the expertise of an intensive care nurse is coming in. We could do at home what nurses and doctors do in intensive care. We just do it in a different environment.
So, you need to know when you’re going home, what equipment you need to set it up. You need to know what a nursing roster needs to look like, what’s a good fit for a client. And again, we get you involved in the selection process of the nurses. You need to ask the right questions and we know what questions to ask.
And also, again, if you are an NDIS support coordinator watching this, you should contact us as well. We can help you with the funding for someone on a ventilator with a tracheostomy in intensive care. Or if your client is at home already and doesn’t have enough support, we can help you with that as well. We know how to go about the advocacy.
Next, again, coming to equipment, what is needed? You need at least two BIPAP machines in this situation or two ventilators. You need spare tracheostomies in case of a tracheostomy block. You need spare tracheostomies because the tracheostomy needs to be changed regularly. You need a humidifier, because when you have a tracheostomy with a BIPAP, you need humidified air. And if your loved one or your wife is not on the BIPAP, you still need a humidifier and you need to use a tracheostomy mask with humidified air or sometimes humidified oxygen depending on the need. You haven’t shared whether your wife needs a lot of oxygen as well.
You need suction machines. You need at least two suction machines in order to suction the tracheostomy. Again, this is almost like a lifeline. You can’t go home without a suction machine and an intensive care nurse knowing how to operate the suction machine. You need Ambu bags or at least one or two Ambu bags. Again, if for whatever reason both ventilators stop working overnight, then you need to need the Ambu bag to hand ventilate your wife or someone on a ventilator at home. You need oxygen, whether that’s an oxygen cylinder or whether that’s oxygen concentrators, you need all of that.
You need, again, spare tracheostomies. You need spare tracheostomy dilators in case of dislocation of a tracheostomy in case of collapse of the stoma. Most stomas are formed well, especially if they’ve been there for a long time, but especially the newest formed stomas, you may need a tracheostomy dilator in case the stoma collapses, if the tracheostomy comes out. Shouldn’t really happen, but it can happen.
What else? I assume your wife has a PEG (Percutaneous Endoscopic Gastrotomy) tube or maybe she still has a nasogastric tube, if your wife is going home, she should have a PEG tube instead of a nasogastric tube and the PEG tube can be reversed, but in order to go home safely, it is safer to go home with a PEG tube and then hopefully your wife can start eating as well. You haven’t mentioned anything about that she can’t swallow.
Next, you then need a stable 24-hour intensive care nursing roster at home. So, for a 24-hour roster to be stable, we often work in 12-hour shifts or eight-hour shifts and then 10-hour night shifts. It depends on staff’s availability, and it depends of course on your preferences as well. We try to get a roster that works with your preferences as well, as well with the staff availability’s preferences. We need a minimum of 10 staff on a 24-hour roster to cover for shortfalls, cover for sick calls, for annual leave, holidays, all of that. Our goal for every client is to cover, 24 hours a day, so that there are no gaps in the roster.
I mean, that’s one of our KPIs, our key performance indicators. We have two main key performance indicators. One is zero readmissions back to ICU, or I should say zero non-elective readmissions back to ICU, and we have another KPIs to have all shifts filled for our clients, which makes sense. We can’t go without unfilled shifts. That’s not an option. So, we usually achieve both. We have a very committed team that’s doing what’s right for our clients and what’s right for our clients is keeping them at home and helping them with achieving their goals at home.
And what are their goals? In your case, it’s quality of life. Your wife wants to be at home instead of an intensive care unit, which makes perfect sense. Who wants to be in an intensive care unit if they can be at home? So, then we can start working on weaning your wife off the ventilator, hopefully overnight as well. And eventually maybe she can have the tracheostomy removed. The less time she has on a ventilator, the better it is. And once she can swallow again, then maybe it’s time to remove the tracheostomy. Then she can go back on the BIPAP overnight just with a mask instead of the tracheostomy.
But going home after three months in ICU I think is way overdue because your wife, like you shared in your email, she’s depressed and she doesn’t feel like she’s got any control over her life. She doesn’t feel like she’s got any quality of life. She doesn’t feel like she’s getting the care that she needs. She’s also complaining about having different staff all the time. And this is obviously the beauty of home care environment where we have stable teams. We’re all about stability and sending the same staff to the same clients over and over again, again, to have that stability.
So, your wife should also have a sleep study before she’s going home so her ventilation settings can be optimized. And you were saying that she’s got a sleep study lined up and they should be doing arterial blood gases during the sleep study, making sure they’ve optimized the ventilator settings so that there don’t need to be any changes by the time she’s going home. Very important. Very important. So, from a hospital point of view, also, keep in mind, we are cutting the cost of an ICU bed by around 50%, that’s five zero, by around half really. And if you think about that, an ICU bed is five to $6,000 per bed day, and we are cutting that cost by half. So, it’s a win-win situation. We are reducing the cost of an ICU bed by around 50%. We are freeing up an intensive care bed that is in high demand. So, it’s a win-win situation. More importantly, we improve the quality of life or quality of end of life in some situations for our families and patients at home. So, I hope that makes sense.
Now, if you have any questions due today or anything intensive care or Intensive Care at Home related, please type them into the chat pad, that would be great. Or you can dial in live on the show. If you are in Australia, you can call in on 041-094-2230. That is again in Australia, you can call in live now, 041-094-2230. If you’re in the U.S., you can dial in on 415-915-0090. That is again 415-915-0090. And if you are in the U.K., you can dial in 0118-324-3018. Again, U.K., 0118-324-3018. Or you can just type your questions into the chat pad now and I will answer them live on the show.
So, it’s much easier to go home from ICU than you think it is, especially if you’re dealing with a service like ours. We have accreditation for Intensive Care at Home, third party accreditation, including NDIS accreditation. And we have built the intellectual property to make it happen for clients and their families to leave intensive care. And we’ve also built the intellectual property and accreditation for intensive care units so that we can keep clients at home predictably, so that ICUs don’t have to worry about patients coming back to intensive care all the time. That would defeat the purpose of our service. Maintaining that stability and predictability at home for someone on a ventilator with a tracheostomy is critical.
How long will it take for your wife to go home? I’d say any time between two and four weeks at the most, two to four weeks at the most. We can set up a 24-hour roster pretty quickly, assuming you’re not in a remote or regional area. But even then, we can set up rosters. We have clients in remote and regional areas, and we run 24-hour rosters there. Might take us a little bit longer to set it up, but it’s still possible. There’s no issue there.
You’ve also asked, would there be any resistance from ICU? I don’t think so. I don’t think that there’ll be any resistance. They’ll be glad to empty the ICU bed because they have so many patients knocking on their door in need of an of ICU care. So, you shouldn’t worry about the ICU not wanting to help you with this.
So, we talked about funding, we talked about how to set up the team. Let me know what other questions you have about this. Even if you are not watching this live and you are watching this as a replay, you should still type your questions into the chat pad and then I’ll address them in a separate video or the next live stream. Please keep asking questions.
Okay, so let’s slowly wrap this up for today.
Finally, what ventilators do you need at home especially with sleep apnea? You probably need a ResMed ventilator. ResMed is specialized on ventilation therapy at home. Again, you should talk to us. We can set you up with ResMed and help you select the right ventilator. Maybe the ICU has already been in contact with ResMed to select the right ventilator, but if not, please contact us. We can set you up with ResMed and again, make it a smooth experience and a win-win situation for everyone.
Okay, now, if there are no other questions, I’m going to wrap this up in a minute. Thank you so much for joining the show and thank you so much for your support.
Now, if you have a loved one in intensive care and you want to go home, you should check out intensivecareathome.com and you should contact us on one of the numbers on the top of our website at intensivecareathome.com. Again, if you have a loved one in intensive care on ventilation with tracheostomy or a non-invasive ventilation, BIPAP, CPAP, or if your loved one is medically complex and stuck in ICU but isn’t necessarily ventilated with a tracheostomy, you should contact us as well, again at intensivecareathome.com and call us on one of the numbers on the top of our website or send us an email to [email protected].
Again, we also provide services for home TPN, also provide services only for tracheostomy clients and your loved one might have a tracheostomy, it’s not ventilated. Or if you’re watching this, you might have a tracheostomy, or you are ventilated. One way or another, you should reach out to us.
If you have a loved one in intensive care, you can also look at intensivecarehotline.com for our consulting and advocacy. Again, you can go to intensivecarehotline.com and call us on one of the numbers on the top of the website there or send us an email to [email protected].
Also, have a look at our membership for families in intensive care at intensivecaresupport.org. There, we have a build a membership for families in intensive care where they can ask questions, 24 hours a day, in a membership area and via email, and you can take that out.
Also, if you want a medical record review, for your loved one in intensive care or after intensive care, especially if you suspect medical negligence, if you want a second opinion, you should contact us as well. We can help you with the medical record review. Don’t let ICU tell you it takes 30 days to get access to medical records. Don’t let ICU tell you that you can’t have access to the medical records. As long as you are the power of attorney, next of kin, you have a right to access medical records anytime. What is it that they have to hide? You got to ask that question. So, we can help you with getting access to medical records as well if you’re struggling with it.
Again, thank you so much for your support. Thank you so much for watching.
Like the video, click the notification bell, subscribe to my YouTube channel for regular updates for families in intensive care, and share the video with your friends and families, and comment below what you want to see next or what questions and insights you have, or send me a topic for the YouTube live stream what you want me to discuss here.
Again, thanks for watching.
This is Patrik Hutzel from intensivecareathome.com and intensivecarehotline.com and I’ll talk to you in another live stream next week, same time.
Take care for now.
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 (National Disability Insurance Scheme), 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.