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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,

DOES A TRACHEOSTOMY REDUCE LIFE EXPECTANCY?

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

https://intensivecareathome.com/does-a-tracheostomy-reduce-life-expectancy/

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

 

How Long is a Patient with a Tracheostomy and Ventilation Going to Live in the Community?

Hello and welcome to another intensivecareathome.com livestream.

Today’s topic is, “How long is a patient with a tracheostomy and ventilation going to live in the community?” Once again, this is a question we get quite frequently here at intensivecareathome.com.

Before I go into today’s topic, once again, this is a question we get quite frequently and it’s a question that we get from families in intensive care, but it’s also a question that we get from members of the community. It’s a question we get from our clients, and I want to do a deep dive there today and focus on some case studies of course, but also focus on the journey that some of our clients have been through.

Now also, last week, I did a YouTube live with the title of, “How long is a patient with a tracheostomy going to live in the community?”, obviously.

So, with intensivecareathome.com, we are looking after predominantly long-term ventilated adults and children with tracheostomies in the community. But we’re also looking after adults and children that are not ventilated but have a tracheostomy. We’re also looking after ventilated adults and children at home that are non-invasively ventilated such as BIPAP (bilevel positive airway pressure), CPAP (continuous positive airway pressure), VPAP. All of it is done with 24-hour Intensive Care at Home nursing. So, our critical care nurses/intensive care nurses are coming into your home to provide you and your family with the quality of life and in some instances, quality of end of life that you deserve far away from a busy, noisy, non-patient and family friendly hospital. You are in a much better environment at home than you are in a hospital. You will see when I give some case studies that some patients with tracheostomy and ventilation at home can live for a very long time. But I will again give some case studies in a minute.

Now, before I dive deeper into today’s topic, what makes me qualified talking about today’s topic? So, once again, my name is Patrik Hutzel. I’m the founder and managing director of Intensive Care at Home. We have been providing Intensive Care at Home services, and I should say third-party accredited Intensive Care at Home nursing for over 10 years now here in Australia. I was also part of a startup nursing service 25 years ago in Germany. We were the first service there who was providing Intensive Care at Home. We were the first service on a large scale that took patients home from intensive care in Germany. Of course, when I first came to Australia, I thought, well, the same can happen here, and of course it does now.

So, I have decades of experience not only working in intensive care. I’ve 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’ve been managing Intensive Care at Home for the last 10 years, starting it from scratch. So, I have a very good understanding of what’s happening in intensive care, but I also have a very good understanding of what’s happening in the community with long-term ventilated and tracheostomy clients and want to do a deep dive today.

Now, also want to thank you if you’re watching this on replay, if you couldn’t come to the live stream, want to thank you for watching this on replay. Whether you are here live now or whether you are watching this on replay, please type your questions into the chat pad and I will answer them and would love to share more about our area of expertise, how we can help you and your loved ones at home.

So, let’s break this down, “How long is a patient with a tracheostomy and ventilation going to live in the community?” So, let’s start with some examples. We have been looking after a number of clients in the community, adults and children with tracheostomies. Adults, we have some C1, C2 spinal injury clients. They can live for decades. Often the only thing that’s wrong with them is obviously the high spinal injury, but if their organs are working, they could live for decades and they can live with a very good quality of life. Most of our clients have community access. Sometimes they can talk, sometimes they can’t talk, but often they can communicate with an eye gaze via computer, via iPad. So, there’s definitely options for them to communicate with everyone in their surroundings. They’re not in palliative care. They want to live an active life. Some of them go travelling. We have been travelling with some of our clients, weekends away, 10 days away to a holiday destination. We’ve done it all in that aspect.

So, imagine what’s the alternative for these vulnerable clients? The alternative for them is to go back to intensive care if it wasn’t for our service. The alternative is to get stuck in a bed space in a sterile hospital and ICU bed, whereas the much better alternative is for our clients to go home and live a good quality of life in their home care, in a home care environment, in a family friendly environment.

What we do really is we bring the intensive care nurses into the home and provide all the equipment, provide a roster, provide a team leader, a care coordinator. We go down the whole nine yards, if you will, to make this possible for our clients so that they can live long and fulfilling lives and meaningful lives.

There are no meaningful lives in intensive care except for the short-term, of course. Lives are being saved in intensive care all the time, and that is very meaningful of course. However, once you pass a certain period of time in intensive care, you want to go home, especially if you are long-term ventilator dependent with tracheostomy.

Now, disclaimer, I should also say that currently because the question comes up, which locations do you serve? Currently, we are operating all around Australia, in all major capital cities including rural and regional areas. So, we are NDIS (National Disability Insurance Scheme) accredited. We are ISO 9001 Healthcare Service accredited. We are working with the TAC (Transport Accident Commission) in Victoria. We are working with iCare in New South Wales, with NIISQ (National Injury Insurance Scheme in Queensland), also with the DVA, the Department of Veteran Affairs. We are also working with hospitals directly. We have received public hospital funding as well as Department of Health funding.

But even if you’re watching this and you’re in the U.K. or in the U.S., we can help you one way or another because we have actually helped families in the U.K. and in the U.S. with the advocacy side of things for Intensive Care at Home, even though I’m not aware of any similar services to what we do compared to other countries, but we can still help with the funding side of things. We can help with the advocacy and then you can hopefully find your own service in your own area. So, that’s a bit of the lay of the land.

Other clients that can live sometimes for long periods of times in the community is motor neurone disease clients. We have looked and we are currently looking after clients with motor neurone disease that are ventilated, have a tracheostomy. I did briefly mention earlier about my experience in Germany. There we had quite a number of MND, motor neurone disease, patients living at home for years to come. Duchenne syndrome, ventilation, tracheostomy, cerebral palsy clients, ventilation, tracheostomy. Again, those clients live a much better quality of life compared to if they were stuck in an ICU bed.

It makes perfect sense taking adults and children home to live a better quality of life at home. We also have kids at home living there with a ventilator and a tracheostomy. Again, sometimes they can be decannulated, sometimes they can be weaned off the ventilator and sometimes they can’t, and they can still live for long periods of times. I’m sure you as a family, you want to maximize the time you can spend with your loved ones outside of a hospital and not being in an intensive care environment.

Now, on the other end though, part of what we do as well is palliative care or end of life care. So, sometimes it is desirable for a long-term ventilated patient with tracheostomy to leave hospital and have end of life care at home. So, certainly a big aspect of what we do is also palliative care or end of life care at home.

So, whilst we want to maximize quality of life for our clients, that can live for many years to come, in certain instances it’s also a case of going home on a ventilator with a tracheostomy and have palliative care and end of life care at home, which again makes perfect sense. ICU beds are in high demand, they’re scarce, and we can help ICUs free up their in-demand beds, save cost and provide quality of end of life or palliative care at home. It’s where people want to die.

If you look at the research, 75% of people, if given a choice, want to die at home. The current reality is, it doesn’t matter where you are in the world, the current reality is that about 75% of people die in hospitals and not at home. That number needs to be switched around. We can’t be a heartless and gutless society and not provide that for our people. It’s 2023. We are no longer in the dark ages and we need to do better at providing end of life care where patients and families want to be in those unique and once in a lifetime situation.

So, with all of those examples in mind, to answer the question more succinctly, how long is a patient with a tracheostomy and ventilation going to live in the community? The real answer here is that it all depends. Now, here is a word of warning. Before I give a warning, I need to go one step back. When patients go into the community, adults and children with ventilation and tracheostomy, they need to be looked after by critical care nurses with the minimum of two years ICU experience.

Now, this is evidence-based. When you look at our website, intensivecareathome.com, there is a section on our website where it says Mechanical Home Ventilation Guidelines. Now, these Mechanical Home Ventilation Guidelines are evidence-based. They are a result of over 25 years Intensive Care at Home nursing in Germany and now for over 10 years in Australia. Clearly, the only way to look after long-term ventilated patients with tracheostomy is with critical care nurses/intensive care nurses with a minimum of two years ICU/CCRN experience. Now, everything else could be deadly, and as a matter of fact could be a death sentence.

Now, case in point, a few years ago, we were looking after some tracheostomy and ventilated patients at home, adults and children. At this stage, the NDIS was only funding night shifts. Now, we made a lot of noise at the time saying, “Look, people from the NDIS”, but we were also sitting down with the families of course saying, “Look, the minute we finish the night shift here and the families were taking over the care or sometimes support workers”, that’s basically people off the street with no healthcare background, no healthcare training, let alone intensive care nursing training, looking after these vulnerable adults and children. All three participants passed away during the daytime just as we predicted at home because medical emergencies could not be managed by support workers or family members.

Now, this is heartbreaking stuff, but it’s also real stuff and it can’t be ignored. I will give these examples until I’m blue in my face, even if I sound like a broken record. The reality is, once again, we as a society need to do better than that and we need to pay attention to what is evidence-based, not what is cheapest. If a support worker could look after a ventilated and tracheostomy patient in a hospital, why are we not putting support workers in intensive care or on a hospital ward and let them do the work that a registered nurse with many years of training and education is doing? So, why would we change that in the community?

So, people from intensive care can go home, no question about it, with what’s evidence-based, which is critical care nurses with a minimum of two years critical care nursing experience. Full stop.

If someone from the NDIS is watching here, I’m still waiting for any acknowledgement from the NDIS that these people have died, and the NDIS still hasn’t done any investigation. It’s disgraceful to say at the least. The NDIS is well aware that two children have passed away at the time and one lady of around six years of age, those deaths could have been prevented.

The NDIS needs to stop paying lip service to choice and control, needs to stop paying lip service to what’s reasonable and necessary, needs to pay attention to what is evidence-based and what is necessary to improve quality of life and keep clients and NDIS’ participants at home predictably so that they can live a good quality of life with no fear of hospital readmissions, with no fear that their lives are at risk because of some bureaucrats making funding decisions that they don’t understand. By doing so, they have blood on their hands. I know YouTube probably doesn’t want me to say these things, but I need to say it anyway because the general public needs to be informed about these things.

So, if evidence-based care is provided at home and we set up the mini ICU, once again, patients can live for years, decades to come, assuming they have the right level of care and treatment. But again, it all comes down to the goals of care as well. That means what are your goals of care for you, for your loved one? Are your goals of care to leave intensive care as quickly as possible, continuing treatment at home, improving your quality of life, having community access, pursuing your goals and dreams. Maybe you want to start a business, maybe you want to go back to school, maybe you want to go study, maybe you want to go travelling. That sounds from an intensive care perspective, if you’re stuck in ICU, that sounds like it’s not achievable, but I can assure you it is achievable because we’ve done it. We are doing it every day, and it is absolutely doable. Don’t think small, think big and know what’s possible, and have a look on our website also at our case studies for Intensive Care at Home.

So, make sure you document your goals of care. Make sure you document an advance care plan so that the hospitals and your treating doctors know what you want and then act on it. Make sure you communicate your goals of care to the NDIS or any other funding body. If you don’t qualify for NDIS, make sure you communicate your goals of care maybe to your private health insurance, to the Department of Health. Make sure that you inform as many people as possible so that people can work with you and help you with achieving your goals for quality of life or in some instances, quality of end of life.

For example, when I worked in intensive care, I have seen some patients there die on a ventilator with a tracheostomy, sometimes over many weeks, sometimes many months. The longest that I’ve seen is actually two years, and there was no need for that. With a service like Intensive Care at Home, it can all be done at home. So, there’s absolutely no need to stay in intensive care.

From a hospital perspective, if you are an intensive care specialist watching this, if you are an intensive care nurse or an intensive care nurse manager watching this, if you are a hospital executive watching this, you know you’ve got bed blocks in ICU, adults and pediatrics, you know have exit blocks sometimes on your hospital wards, sometimes you have tracheostomy patients sitting on your hospital wards.

If you are an NDIS support coordinator and you’re watching this and you are wondering, “Well, how can I get my NDIS participants out of hospital safely, not get them home at all costs?” How do you get them home safely? Safely means that with intensive care nurses, 24 hours a day, that is the only safe way.

Again, this is evidence-based, its third party accredited. If you’re an NDIS support coordinator, I promise you that in 2023, you will not find any other nursing service in Australia that is third-party accredited for Intensive Care at Home. We are the only service in Australia at the moment that has developed and maintained this and continues to develop the intellectual property and the decades and hundreds of years of intensive care nursing experience that we bring into the community to make this happen, every day of the week.

Now, other things that we do these days is we are also providing an emergency department bypass service. We’re currently providing the emergency department bypass service for the Western Sydney Local Area Health District. So for example, we do home visits to avoid emergency department presentations. So, we do the assessment at home and do the hands-on work at home, often doing things such as changing nasogastric tubes followed up by a home x-ray, changing tracheostomy tubes, changing catheters and other things that avoid emergency department presentation. So, our nursing workforce is highly skilled and there’s really nothing we can’t do at home in the current environment.

So yes, if you are a hospital employee one way or another, you would know about bed blocks. I would encourage you to contact us as well to help you manage your exit blocks and your bed blocks specifically in intensive care.

Now, if you’re a family member watching this and your loved one is in intensive care, or this morning actually I had a phone call from a prospective client who says, “Well, my 22-year-old son has cerebral palsy. He’s in ICU, he’s on a ventilator with a breathing tube at the moment, and he’s not waking up from the induced coma.” So then, when I realized that this young man has cerebral palsy, I said to her, “Well, do you have 24-hour nursing care at home? Does he go back to ICU all the time?” She said to me, “Yes, he’s been bouncing in and out of ICU for the last six months.” Then I said to her, “Well, do you have nursing support at home?” She says, “No.” Then I said, “Well, many of our clients have cerebral palsy, none of them goes back to intensive care into the home with our highly qualified staff.” With that said, our clients don’t go to hospital. The hospitals can rely on us keeping our clients at home predictably, so they don’t use up emergency department bed, let alone and ICU bed.

So, if you are stuck with a situation as a family where you’re either having a loved one in intensive care long term, or your loved one is bouncing in and out of hospital, bouncing in and out of ICU, you should contact us because we can put a stop to that with our highly skilled critical care nursing workforce in the community, with our highly skilled critical care nursing team in the community. So, that’s what we do in a nutshell.

Now, the patient that’s been on our books the longest at the moment is about eight years. Can you imagine that? Eight years. This was actually a young lady who initially came to us for palliative care. We improved the quality of life at home for her and her family. At the moment, she’s doing really well. She’s very young, she’s only 20 years of age. We looked after her since a very young age and that’s what’s possible at home. Don’t let the hospitals drag you down with a doom and gloom with the negativity because a lot more is possible at home than you think there is. Our amazing team of critical care nurses makes it possible.

Now, the other day, I actually did an interview with Rajiv Mathur from Critical Care Unified in India. Intensive Care at Home now is also a big thing in India. So, I’m glad that other countries follow suit to what we are doing to what’s happening in Germany already. So, have a look at the interview that I did with Rajiv Mathur. They’re running an amazing Intensive Care at Home service in India, and he’s telling you all about it there, how it improves the quality of life for patients, for their families, how it improves resource management in hospitals, how it frees up critical care beds to free them up for more patients that are in need of critical care.

If there are too many bed blocks in ICU and there are no empty beds, well what do you do with the people that need critical care now. By us freeing up the beds, we enable more critically ill patients to receive acute intensive care. So, there’s a whole ecosystem around this which provides win-win situations for everyone. That’s what it’s all about.

It’s about providing win-win situations for everyone, improved quality of life for our clients and their families. Cut the cost of an intensive care bed by around 50% and free up the in demand and highly sought after intensive care bed, free up equipment in intensive care, free up staff in intensive care to focus on patients that need acute intensive care. Saving lives, and once the life has been saved, and if patients are stuck on ventilators or tracheostomy, that’s when you should be thinking about a service like Intensive Care at Home.

So, I do hope that this answers the question, how long is a patient with a tracheostomy ventilation going to live in the community?

Now, I want to continue today with answering some questions that came in during the week, of course. Now, if you have any questions, I welcome you to type them into the chat pad here so I can answer them of course. Let’s look at some questions that have come in this week. I just quickly need to dig out my emails on my phone here so that I can read them out. Just bear with me.

So, the first question that I want to answer comes from one of, I’ll keep this anonymous, but we are currently dealing with an inquiry, who has their four-year-old son in intensive care. Again, coming back to cerebral palsy, what I mentioned a minute ago, four-year-old boy has been in intensive care with cerebral palsy because at home basically he was drowning in his own secretions, and he ended up with initially a chest infection and then with a pneumonia. He ended up in ICU on BIPAP and initially in the pediatric ICU, they were telling the family that he won’t be able to survive, and it was looking pretty critical for a while. He was on 80% of FiO2, up to 80% of oxygen on BIPAP. The hospital was reluctant to intubate him saying, “Oh, well, he would never come off the ventilator.”

Well, cutting, long story short, thank God he did survive and he’s out of intensive care now. However, he might need a tracheostomy in the long run. He might need some BIPAP in the long run. But what he needs more importantly to go home safely so this won’t happen again, is he needs critical care nurses, 24 hours a day. Like many of our other cerebral palsy clients that are in a similar situation, they have epilepsy, they have regular seizures, they can’t cough, they drowning in their own secretions, they need regular suction, they need a nasal pharyngeal airway, they need chest physio.

So, we have some cerebral palsy clients at home that they have CPAP at home, BIPAP at home, they have a tracheostomy, sometimes have a ventilator, and we keep them at home predictably. So, no need for ICU admissions with 24-hour intensive care nursing and the example that I’ve just given you could have been completely avoided by having 24-hour funded intensive care nurses at home like we do with many other cerebral palsy clients. There’s no need to put those clients’ lives at risk, especially if they’re regularly having seizures, they’re at risk of aspiration, they’re already risk of a pneumonia by drowning in their own secretions. They’re often at risk of a pneumonia because they have scoliosis. So, the risk factors are huge, and unless you can manage that at home with intensive care nurses, 24 hours a day, it’s highly risky.

It’s highly inappropriate to send those kids in particular, but also young adults or older adults, home without intensive care nurses, 24 hours a day, that need to be competent in airway management. They need to be competent in airway management. They need to keep be competent in chest physiotherapy. They need to be competent with nasopharyngeal airways. They need to be competent with deep suctioning. They need to be competent in recognizing the signs and symptoms when it comes to chest infections, pneumonia, but preventing that in the first place. They need to be competent in knowing when to start nebulizers, when to start a saline nebulizer, when to potentially start Ventolin or Atrovent, when to ask for help, when to escalate to a medical practitioner and so forth. So, those are the risk factors, and that’s when people can live at home for long periods of time.

So, it’s all possible at home, no need for an ICU admission where then all of a sudden doctors tell you, “Oh, your loved one won’t survive, your child won’t survive.” It can all be done at home. Imagine in a hospital the infection risk. A lot more is possible at home. Often hospitals don’t know what’s possible at home either because they’re so stuck in their hospital mindsets, they don’t have an idea what is possible in the community, how creative we can be by making it all happen for our clients, but also making it happen for hospitals because once again, it’s a win-win situation for everyone.

So, if you have any questions in regards to how we can help you, just type them in the chat pad or go to intensivecareathome.com and contact us there. You can send us an email to [email protected] or you can call us on one of the numbers on the top of our website.

Now, another thing here is that I need to mention if you are struggling, if your family is dealing with NDIS or lack of NDIS funding, if you’re not getting enough funding, if you feel like your NDIS support coordinator can’t help you with nursing funding, please contact us. We are now employing our own NDIS support coordinator, so please contact us. We are now employing a level three specialist NDIS support coordinator that can help with nursing funding from the NDIS. All of our clients have 24-hour NDIS nursing funding if they’re ventilated, having a tracheostomy, and they’re not eligible for other funding sources, of course. So, you should contact us when it comes to funding. We can help you with that as well.

Now, let’s go to the next question from Nidia. Nidia says, “My mom is in ICU and on a tracheostomy and ventilator. We would like to wean off of the tracheostomy and the ventilator at home instead of the ICU and came across Intensive Care at Home. Can you give us more information regarding the possibility of weaning at home versus in an ICU? My mom needs dialysis, she needs physical therapy, occupational therapy, wound care. So, there are a few things going on, but we are open to exploring options. Thank you in advance, from Nidia.” Yeah, absolutely Nidia. This is once again, this is bread and butter for us.

Weaning patients off ventilation and tracheostomy at home, dialysis is all possible. Physical therapy, physiotherapy is all possible at home. No issues one way or another. That’s whatever is needed at home, we can do. Whatever they do in intensive care in situations like that we can do at home. So, nothing that we can’t do, assuming your mom is stable and not on vasopressors and inotropes, but she’ll probably have much higher chances to be weaned off at home because she’ll be in her own familiar environment. Whereas in a hospital, you’ll be surrounded by strangers. Once we start hiring a team for your mom, you will see that things will be so much smoother in comparison to what’s happening at the moment. Obviously, you haven’t mentioned that, but the reason you’re probably reaching out is your mom is not having any quality of life.

You don’t have any quality of life because you’re probably spending day and night in ICU. Other family members probably don’t have any quality of life because they’re spending day and night in ICU. For the hospital it’s probably been already flagged as a risk because your mom is, for lack of a better term, blocking a bed in ICU. They probably need the bed for many other patients in need of acute critical care. So one way or another, it’s going to be an issue on all ends. Once again, what we are doing here at Intensive Care at Home, we are providing a win-win situation for everyone. It’s a win-win situation for everyone as you can see.

Let’s move on to the next question from Tammy and says, “My fiancé has been in ICU and wishes to go home but needs help with at least the ventilator, tracheostomy or dialysis. I could do one but not both. Please get back to me when you can about any information you have on this. I did patient dialysis at home with him. I’m trying to see if he can go home on dialysis and ventilator or tracheostomy. Like I said, I can train for one if needed, but couldn’t do both.” No, and Tammy, you couldn’t do both. Remember, a minute ago, I said that we had patients at home or clients at home, adults and children, some with ventilation and tracheostomy, some not ventilated, but had a tracheostomy and they died during the day when no intensive care nurse was present.

Once again, it comes back to our website, the mechanical home ventilation guidelines, which are evidence-based cannot made up out of thin air. They’re made up out of evidence after 25 years of Intensive Care at Home nursing in Germany and over 10 years of Intensive Care at Home nursing in Australia.

So, you got to keep in mind that it has to be safe. It’s all possible. Now, what you’re asking here is very relevant and it’s all possible, but it has to be safe. We can’t really train families on what took years of intensive care nursing to learn when it comes to dealing with ventilation and tracheostomy. It comes of years of training and hands-on experience. Sometimes we have organizations contact us asking, “Oh, can you train support workers on tracheostomy or ventilation?” I say that’s a death sentence and I have the evidence to back up what I’m saying. You can’t train a support worker, that’s like flying an airplane with a cabin crew instead of the pilot. A disaster is waiting to happen and we all know that disasters have happened and people have died and it’s not good enough.

So, if that was the case, why can’t you send a support worker or an untrained person in ICU and look after a critically ill patient on a ventilator with a tracheostomy if that was the case? So, the answer is a clear no. The answer is that your fiancé needs intensive care nurses, 24 hours a day at home, but that’s all possible, once again. Not sure where you are, but with NDIS funding or other funding sources, it’s all possible. Please contact us for more information.

Now, let’s go back to some other questions that have come in this week. They’re probably a little bit more related towards families in intensive care as well.

So, here is a question from Patricia who says, “My mother was admitted to ICU last year, November 29th with pneumonia. She got sedated and needed a ventilator working with 100% of oxygen. As she was not responding to medications quickly enough, they started proning her to improve her lungs and it worked until they got her to 50 to 60% of oxygen on the ventilator. Not really sure how much.

Then, because of the proning procedure, she had a cardiac arrest on December the first. The doctor on site says it lasted less than four minutes and she was assisted at all times. They got off all sedations completely on December the 25th, after weaning it off for a little longer than a week. She would open her eyes and move them but would not focus. She would sometimes move her legs and feet as well.

A few weeks later, she was cured from her illness and was able to breathe on her own, but still using the tracheostomy with little neurological improvements. She was released from ICU on January the 16th. Since then, we saw her biggest neurological improvements. She will now focus on people talking or moving around the room and on the TV. Will blink when asked to, and she’s also moving her arms and legs quite frequently.

Still, we are very confused about her neurological prognosis. Most doctors are either negative or as vague as possible. We still hope there is some sedative running on her body as she sleeps most of the day. During her time in ICU, she took medications for everything. They never knew what got to her.

On your website I have read that cardiac arrest, kidney failure, ARDS, septic shock and using two different sedatives at the same time could delay waking up. She had all of this. What do you think? Could it be a delayed waking from sedation or at this point there is no possibility other than anoxic brain injury even though it lasted less than four minutes. Please give us your opinion. We don’t really know what to do or think. We feel lost and the doctors won’t really help. Thanks in advance and sorry for the long text.” That’s great, Patricia. Thank you so much for sharing your mom’s situation here.

So, I think overall it’s very positive that your mom came out of this and survived. I’m sure they would’ve been negative right from the start, and they probably would’ve told you things like, “Oh, she’s very unlikely to make it and if she’s going to survive it, she’ll probably never wake up.” So, it sounds to me like she’s come through the worst. It sounds to me like she’s making already making progress and you have to be patient.

Now, another missing link here is this, Patricia, so while she was prone, she would’ve been on, for lack of a better term, truckloads of sedation because imagine you’re on a ventilator with a tracheostomy, you’re lying head down and you’re lying on your tummy. That’s very uncomfortable. So, during those periods, not only do patients need to be heavily sedated, often with midazolam, propofol, fentanyl, or morphine and really double doses. That’s one thing. Number two, when patients are prone, because once again it is so uncomfortable, they’re often chemically restrained, which means they get muscle relaxant or paralyzing agents so that they can’t move. Now, that’s certainly delaying the waking up process as well.

Now, one thing that you haven’t mentioned here, Patricia, is it doesn’t sound to me like you had neurology input. It doesn’t sound to me like your mom has been seen by a neurologist yet. It doesn’t look to me like a CT of the brain has been done. It doesn’t look to me like an EEG has been done. It doesn’t look to me like an MRI scan of the brain has been done. Once again, it doesn’t look to me like a neurologist has given or has made an assessment. So, that are some missing links here.

Now, you also haven’t mentioned how often is your mom getting physical therapy? Is she mobilizing? Is she getting out of bed? Is she in a natural day and night rhythm? Can she sleep at night? What does her basic nursing care look like? Are her basic nursing care needs met? Is she getting regular washers? Is she getting regular showers? Is she having good mouth care? Does she have a team, a nursing and medical team around her that knows her? She would’ve been on a truckloads of medications while she was in an induced coma and while she was getting acute care treatment for the ARDS (Acute respiratory distress syndrome).

Is she in kidney failure? Is she in liver failure? Is there potentially delay in getting rid of sedatives and opiates still because she’s in kidney or liver failure, i.e., medication still can’t be processed quickly, metabolized quickly and is she therefore “in a hangover” type of situation. So now, do not give up here because the recovery can take a long time.

The other question here is obviously with the cardiac arrest, does she have a hypoxic brain injury?  Now, it sounds to me like she had an in-hospital arrest, which generally speaking is immediately attended to, whereas if there’s an out of hospital arrest, there’s no guarantee someone will get adequate CPR, whereas in your mom’s situation with being an in-hospital arrest, she would’ve received hopefully adequate CPR. So, the doctor might be right where he’s saying, “Oh, no brain injury has been sustained.” But the only way to find out is really by again, CT scan of the brain, MRI scan of the brain, EEG of the brain. That’s really the only way you can find out.

But I think overall, from what you’ve shared with me, your mom has come a very long way. She has come a very long way. Like you said, you mentioned she had two different sedatives, but she would’ve had opiates as well, like either fentanyl or morphine. Again, fentanyl, morphine, or midazolam can sometimes take a long time to wean off from. Sometimes patients are being addicted to it. They go through withdrawal and that can all contribute to your mom’s current situation. So I hope that helps and explains your situation, Patricia.

So, let me move along to the next question. Again, for you here on the live stream, if you have any questions, please type them into the chat pad of course.

Now, this question here comes from Demit. Demit says, “Hi Patrik. My father had a heart attack in March. He had a brain hypoxia. He just played basketball when suddenly he had a heart attack and he was in arrhythmia. He had no previous medications. He’s healthy, he doesn’t smoke or drink. He was brought to the hospital with no vital signs. He had his heart beat back 30 minutes after the attack. He had been in ICU for 20 days.

Now, we are in a step-down ICU/HDU, high dependency unit. We are advised to continue medication at home. He no longer needs a ventilator or oxygen as well Dextrose. However, my father is still unresponsive. He can open his eyes and blink, but it seems he cannot see us. He cannot speak nor move any of his body, but sometimes when he yawns, he can lift both his hands. Please pray for my father. What can we do in order for him to get better? Please help my family. Thank you very much in advance.”

Now, once again, similar to Patricia’s question a minute ago, what do the diagnostics say? What does the CT scan of the brain show? What does the MRI scan of the brain show? Has he had an EEG done and is he getting mobilized? Is he getting stimulation? What are the chances of him waking up? Once again, Demit, you haven’t mentioned whether you have neurology input. Has a neurologist seen him? Don’t give up. It sounds to me like your dad is young if he was playing basketball. (A), don’t give up. (B), get him mobilized. Make sure he’s getting good nursing care, make sure he’s getting regular showers. Make sure he’s well hydrated, well nourished. Those are the things that you need to focus on for now so that he can recover.

Make sure he’s getting physical therapy, physiotherapy. Make sure he’s getting really good nursing care that you stimulate him, that give him all the attention he needs. I know that’s much easier said than done because people in those situations need a lot of attention and you also have to provide self-care for yourself and for your family. You got to keep and maintain your sanity in a situation like that. So, I hope that helps you Demit in terms of what to do next with your dad.

Now, what else? So, one more question to go and then I will wrap this up. Again, if you have any questions here, please type them into the chat pad and we go from there.

So, here is another question from Kakaros, “On 3rd of June, my brother went unconscious, his eyes rolled back. The doctor told us that he has a heart attack and as a result has a hypoxic brain injury. Up until now, there is no complete treatment for this thing. It’s been a month now. Initially, he can only open his eyes with limited look around movement. Now, he can move his lips a little bit and he also started yawning a few times. Very few times moved out his elbow and his feet. It’s been a week, he’s breathing on his own. Initially he was put on a ventilator. The doctor says from now, it all depends on patients will power to secure complete recovery. He’s having food through the nasal gastric tube. He also has a tracheostomy tube in the neck. Also, MRI scans have shown global or severe hypoxic brain injury. He’s only 33 years of age.”

Well in this situation here, similar to the other two examples from Patricia and from Demit that what’s the MRI scan showing? You’ve already shown that it shows hypoxic brain injury, but in your situation, I would probably look at a solution like Intensive Care at Home. So, your brother will be much better off at home having recovered or having some recovery in your own home where he can go for recovery with a ventilator and a tracheostomy is limited. Not many rehab facilities, if any, can take patients with a ventilator and with a tracheostomy.

So, in your situation, I would focus on Intensive Care at Home. Go to intensivecareathome.com, once again and call us on one of the numbers on the top of our website or simply send us an email to [email protected] because your brother can be weaned off the ventilator and the tracheostomy at home. There’s no need for your brother to stay in ICU. It sounds to me like he’s medically stable and with him being medically stable, he can have Intensive Care at Home. No need to stay in an ICU for any longer really.

So, let’s wrap this up today. Unless you have any other questions, type them into the chat pad and I can get to them. Once again, if you have a loved one in intensive care and you want Intensive Care at Home, please contact us at intensivecareathome.com. Call us on one of the numbers on the top of our website or simply send us an email to [email protected]. As I said, we are currently operating all around Australia in all major capital cities and rural and regional areas.

We are an NDIS approved community nursing service provider. We are a TAC approved community service provider. We are an iCare approved community service provider. We are a NIISQ service provider as well as DVA, Department of Veteran Affairs. We have received funding through public hospitals as well as departments of health.

We also offer level two and level three NDIS support coordination. If you are an NDIS support coordinator and you have a participant that needs intensive care nurses at home for ventilation, tracheostomy, Home TPN (total parenteral nutrition), BIPAP, CPAP, ventilation, because those are not skills for a support worker, please contact us. If you’re struggling with the advocacy, if you need a nursing assessment, if you need help with the advocacy, please contact us if you’re an NDIS support coordinator. You can also contact us if you’re struggling with the advocacy one way or another, even if you’re a family or if you are another stakeholder.

If you are a critical care nurse with a minimum of two years critical care nursing experience, we want to hear from you. We have currently career change opportunities in mainly in Sydney, Melbourne, and Brisbane. We want to hear from you if you want to work with us, but we also want to hear from you if you have long-term patients in your ICU that you think benefit from our service. If you’re an intensive care specialist, we want to hear from you as well. We are currently expanding our medical team as well. But we also want to hear from you if you have bed blocks in your ICU and if you are wanting help with taking some of your long-term intensive care patients home.

If you’re a hospital executive, you know have bed blocks, once again, we can help you with emptying some of your ICU beds, tracheostomy beds, and we can help you with the funding because it’s not of any cost for the hospital really, if the NDIS or other funding, but it’s paid for it.

If you’re watching this and you have private health insurance or you are watching this and you are from a private health insurance, we can help you cut your costs too. But if you have private health insurance and you’re looking for our service and you want our service, please contact us as well.

Now, if you like my videos, subscribe to my YouTube channel for regular updates for families in Intensive Care at Home and intensive care, click the like button, click the notification bell, share the video with your friends and families, and comment below what you want to see next, or what questions and insights you have.

Thank you so much for watching.

This is Patrik Hutzel from intensivecareathome.com and I will talk to you in a few days.

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, 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.