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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,
INTERVIEW WITH INTENSIVE CARE AT HOME SPECIALIST NDIS SUPPORT COORDINATOR, JESSICA DALE
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
How to Use BIPAP Ventilation with Tracheostomy at Home?
Hello and welcome to another Intensive Care at Home and Intensive Care Hotline livestream. Thank you so much for coming on to today’s livestream.
Today’s topic is, “How to use BIPAP ventilation with tracheostomy at home?” I should have probably labelled it, “Can you use BIPAP ventilation with tracheostomy at home?” The short answer is yes, but I will break this down into detail today.
Thanks again for coming on to the live stream. Please type your questions into the chat pad, if you have any. If they’re not on today’s topic, I will still answer your questions, but I will get to that after I’ve gone through today’s topic. I also want to welcome our viewers that are watching this on replay. You can still type in your questions if you’re watching this in the replay version, and then I will get to them in another video.
So, before I go into today’s topic, just quickly a little bit about me, what makes me qualified to talk about today’s topic? I’m a critical care nurse by background. I have worked in intensive care/critical care for over 20 years in three different countries. I have worked in critical care as a nurse manager for over five years. I have been consulting and advocating for families in intensive care all over the world in the last 10 years as part of my intensivecarehotline.com consulting and advocacy service. You can look up our testimonials there. You can look up our case studies, you can look up some podcasts that I’ve done with our clients to verify the results we’ve been getting for them. I’m also the founder of Intensive Care at Home.
We are an Intensive Care at Home service. We’re providing a genuine alternative to a long-term stay in Intensive Care at Home, predominantly for long-term ventilated adults and children with tracheostomy. With intensive care at home, we are currently operating all around Australia in all major capital cities, states and territories.
We are NDIS (National Disability Insurance Scheme) approved, we are TAC (Transport Accident Commission) in Victoria approved, we are iCare approved in New South Wales, we are NIISQ (National Injury Insurance Scheme in Queensland) approved, and also DVA approved all around the country. DVA is the Department of Veteran Affairs. We have received funding through departments of health as well as public hospitals. That’s what I want to talk about today, how to use BIPAP ventilation with tracheostomy at home, because that ties right in with what we’re doing with Intensive Care at Home.
With Intensive Care at Home, we’re employing hundreds of years of intensive care and critical care nursing experience. In our team, most of our nurses on our team have more than eight years ICU or critical care experience. I don’t think any other provider in the country brings as much ICU and critical care experience into the community like we do. We are the only service in Australia that is third party accredited to provide Intensive Care at Home. We are also NDIS accredited, like I mentioned. We also provide level three NDIS Support Coordination. If you are an NDIS Support Coordinator or if you are interested in NDIS Support Coordination.
Now, without further ado, let’s talk about today’s topic, “How to use BIPAP ventilation with tracheostomy at home?” Like I said earlier, I should have probably said, can you use BIPAP ventilation with tracheostomy at home? I guess where I want to start with today’s topic, some of you watching this might have heard of BIPAP ventilation predominantly when it comes to sleep apnea.
A lot of patients at home are using BIPAP on sleep apnea and they do not need a critical care nurse at home, unless they have other comorbidities such as dementia or they have seizures or they have a PEG (Percutaneous Endoscopic Gastrostomy) tube or they have other comorbidities that go on with the BIPAP, or they are stuck in ICU and that’s what I want to focus on today as well or they’re stuck in ICU on BIPAP without a tracheostomy and they have the BIPAP with a mask. So, they also need a critical care nurse at home to leave Intensive Care at Home safely, but that is BIPAP without ventilation.
So, the distinction here today really is about BIPAP with a mask and BIPAP ventilation with a tracheostomy. Both is doable. Both is doable in ICU, of course, both is doable at home, with a third-party accredited service like ours, that can actually make a safe transition between ICU and home possible. But the majority of patients at home or people at home that use BIPAP would be noninvasive with a mask and predominantly for sleep apnea.
Now, what is BIPAP (bilevel positive airway pressure)? BIPAP is a ventilation mode that offers two levels of pressure. You might’ve also heard of CPAP (continuous positive airway pressure) ventilation. CPAP only offers one level of pressure, whereas BIPAP offers two levels of pressure. It’s predominantly used for patients with a high CO2 or carbon dioxide, that’s often when BIPAP is initiated. You might start someone on CPAP and their CO2 or carbon dioxide is still high. Then you start BIPAP and because it’s got two levels of pressure, CO2 comes down quite quickly. BIPAP stands for bilevel positive airway pressure, whereas CPAP stands for continuous positive airway pressure. Bilevel basically means it’s on two levels where you get the pressure on a lower level, one higher level.
Now, it is reasonably rare that patients have BIPAP ventilation with tracheostomy, but it’s definitely there. We’ve seen it, we’ve had it at home, we’ve seen it in ICU, and you can do ventilation with BIPAP at home with Intensive Care at Home. That is actually what’s needed. When you look at our website at intensivecareathome.com, you will actually find a section called the Mechanical Home Ventilation Guidelines.
Now, the Mechanical Home Ventilation Guidelines are evidence-based and are a result of over 25 years Intensive Care at Home services in Germany. Germany was the first country that rolled out Intensive Care at Home services on a large scale, starting in the last century, in the late 1990s, and I was part of it at the time. The Mechanical Home Ventilation Guidelines are evidence-based. Clearly, the Mechanical Home Ventilation Guidelines say that in order to have a patient at home safely, you need critical care nurses, 24 hours a day. Those critical care nurses need to have a minimum of two years critical care nursing experience, ideally with a post-graduate critical care nursing qualification, and that’s pretty much what we have. Over 50% of our staff here at Intensive Care at Home have a postgraduate critical care nursing qualification, similar to most ICUs that have the requirement to have that number or minimum of 50% of their nursing staff with postgraduate critical care qualifications. We offer the same here at Intensive Care at Home. So, that’s very, very important.
Now, it doesn’t stop here. The Mechanical Home Ventilation Guidelines also focus on tracheostomy care at home, for adults and children that are not ventilated. Even for non-ventilated adults and children that have a tracheostomy, they still need to have a critical care nurse with a minimum of two years critical care nursing experience at home, 24 hours a day. Anything less than that is a death sentence.
The reason I’m saying that is that we had clients in the past where we were only funded for night shifts for tracheostomy and ventilated clients. During the day, the funding bodies, and here I named the NDIS in Australia, was not funding day shifts for critical care nurses. Just as we predicted at the time, we said, “Well, the minute we leave here, those clients’ lives are hanging at a thread.” Unfortunately, our predictions became a reality and those clients passed away during the day because families or support workers, people that have worked in a supermarket the week before and are now asked to do intensive care work, could not manage clients on a tracheostomy and they passed away. So, it’s very, very sad.
But it also highlights that the Mechanical Home Ventilation Guidelines that you can find at intensivecareathome.com are evidence-based and are absolutely vital and necessary to provide safe services at home, to transition safely from intensive care to home.
So, similar to other ventilation modes at home, which could be SIMV (Synchronized Intermittent Mandatory Ventilation), could be pressure-controlled ventilation, could be CMV (Continuous Mandatory Ventilation), could be CPAP ventilation. All of those ventilation modes need, once again, critical care nurses, 24 hours a day, in order to make it safe for them.
But more importantly, it’s not only about the safety aspect of things. It’s about improving quality of life and also in many instances, quality of end of life when it comes to palliative care aspects of our service. So, only then can you replicate an intensive care bed in the home. So, evidence is important, staff selection is important, skills are important, rostering experience is important, making sure you understand what the clients want and what they need and tailoring the skill mix around the client’s needs is very important.
It’s a very unique skillset we have built here at intensivecareathome.com. That is hard to replicate, I believe, because it takes years, probably decades to develop that skill when it comes to Intensive Care at Home. Takes years and decades to develop the intellectual property around it. It also takes years and probably a decade now to create the right team that can make these transitions from intensive care to a home care environment possible and make it safe.
So, at the end of the day, can you use BIPAP ventilation with tracheostomy at home? At the end of the day, it’s wordplay, because anyone can go home on a ventilator with a tracheostomy as long as they’re medically stable. They’re not on inotropes or vasopressors. Having said that, we could also do that as long as it’s low level of inotrope or a vasopressor support. With Intensive Care at Home now, we also have just onboarded our first doctor onto our team to enable us to increase the acuity of our patients, once again, that more patients can benefit from going home and not stay in intensive care unnecessarily.
More importantly, if you are a doctor, a nurse working in an ICU or if you’re a hospital executive watching this, you also know the high cost of an intensive care bed. You have other people wanting that intensive care bed. So, not only can we free up your intensive care beds, but we can also cut the cost of it by approximately 50% and you’re not even paying for it. The hospital doesn’t pay for it. Of course, if you want to pay for it, that’s fine. We believe that’s a strong enough proposition to help everyone and again, make it a win-win situation. But BIPAP ventilation at home with tracheostomy is absolutely possible. We have clients at home that use BIPAP ventilation with tracheostomy.
We have also clients at home that are on BIPAP without tracheostomy, but they still need the critical care nurse, 24 hours a day, because they’re very complex. They might have cerebral palsy, they might have seizures, they often have a PEG (Percutaneous Endoscopic Gastrostomy) tube. They have many comorbidities that they couldn’t live at home without the critical care nurse, 24 hours a day. Again, anything less than that is a death sentence. We know of more than two or three clients that have passed away at home, because they needed a critical care nurse at home and they passed away because families or support workers or even general registered nurses without intensive care and critical care nursing experience, could not manage medical emergencies at home and patients passed away. So, I really hope that gives you an overview that BIPAP ventilation with tracheostomy at home is possible.
Now, some people watching this might ask, do you need to do regular blood gases at home to check whether the BIPAP is effective? Generally speaking, no. What should be happening is, on discharge from hospital, you should be doing on discharge from hospital, you should be doing a sleep study, and you should be doing blood gases then and you should be optimizing the BIPAP ventilation before discharge from home. That is the easiest way to deal with that, so that ventilation is optimized, and you don’t need to play around with ventilation at home.
Yes, blood gases can be done at home as well. Capillary blood gases, but it is not ideal. It should be optimized on discharge, so that you can focus on living your life at home, that you can focus on quality of life at home, spend time with your family, minimizing doctor’s appointments. You still have doctor’s appointments of course when you’re at home, but we can take charge of all of that. We can liaise with the specialists on your behalf. We also speak the medical lingo of course, and we can do all of that work for you. So, I hope that explains that BIPAP can be used at home with ventilation with tracheostomy.
Another thing that sometimes happens at home with BIPAP ventilation and tracheostomy. During the day, patients might be off the BIPAP and only breathe via the tracheostomy with the humidifier, with a tracheostomy collar, with a tracheostomy shield, with a tracheostomy mask. Then overnight, they go on the BIPAP. I’ve seen that many times as well. No issue there. So, it can vary a little bit. A lot of patients that need BIPAP don’t necessarily need ventilation, 24 hours a day, and that’s all possible. So, I hope that explains the question, “Can BIPAP ventilation with tracheostomy at home be used?”
Again, if you are in a situation like that, whether you’re a patient yourself and you’re watching this, whether you are a family member of a patient who needs BIPAP ventilation with tracheostomy at home, I recommend you contact us at intensivecareathome.com. Call us on one of the numbers on the top of our website or send us an email to [email protected].
Furthermore, if you’re an NDIS Support Coordinator and you have a participant that needs nursing care for BIPAP ventilation with tracheostomy at home, please contact us. If you are unsure how to obtain funding, nursing care funding for the NDIS for BIPAP ventilation with tracheostomy at home, please contact us as well. We can help you. We’ve been involved in advocacy for the last 10 years. We know what to do. Or if you need NDIS Level 3 Support Coordination, we can help you with that as well.
Once again, if you’re an ICU nurse, ICU doctor and you know of a patient in your ICU that would benefit from our service, please contact us. Even if you’re unsure about the funding, once again, we can help you with NDIS funding or other funding bodies including NDIS Level 3 Support Coordination. We also have a network of OTs who can do functional capacity assessments, physios who can do assessments. We also provide nursing assessments for the NDIS. If you’re a hospital executive watching this and you know about your bed blocks in ICU, please contact us as well. If you don’t know again how to go about funding, please contact us.
So, let’s carry on now with answering questions that came in during the week. If you have any questions and you want to ask them, either type them into the chat pad or I can also get you in on this call, either over the phone or even I can send you a link and then you can participate here live. You don’t need to go on camera, you can just stay with the camera switched off, but you can also go on camera. It’s up to you. I can send you a link. There’s no issue there. Just raise your hand and let me know what questions that you have.
So now, other questions that I want to answer. So, someone contacted us recently and said they have a four-year-old son with cerebral palsy. Their four-year-old son is at home, and he’s having support workers and he’s having seizures, he’s having a PEG tube, needs deep suctioning. Since the beginning of this year, 2023, had numerous, numerous pediatric ICU readmissions with chest infections, pneumonia, has been intubated in ICU with a breathing tube, has had BIPAP on other ICU readmissions. On the last readmission, they were told their son is not going to survive this. Of course, he did survive. However, what needs to happen in a situation like this, especially when it comes to cerebral palsy at home, he probably needs to go on BIPAP. He needs deep suctioning regularly, he needs nebulizers, and that can only be done at home safely with critical care nurses, NDIS funded, because cerebral palsy is a disability. All other secondary issues such as chest infections, pneumonia, the recurrent ICU readmissions are a result of not having critical care nurses at home, which really puts their son’s life at risk.
So, what to do in a situation like that? Well, in a situation like that, you should absolutely contact us because we know there’s many other families out there in a similar situation. You should contact us and we can help you with NDIS support coordination. Our NDIS support coordinator, Jessica, is experiencing rapid hospital discharges, is experiencing obtaining nursing care funding from the NDIS for similar clients. So, you should contact us for any of those issues.
If your child, your loved one goes back to ICU regularly, there’s a very, very good chance we will put a stop to that because we are so experienced in keeping our clients at home predictably. So, I hope that’s one question answered that came in last week.
Another question that came in this week is from Nidia, who says, “My mother is in ICU on a tracheostomy and ventilator. We would like to wean her off the tracheostomy home and came across Intensive Care at Home. Would you mind giving us more information regarding the possibility at home versus in ICU? She also needs dialysis, 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. Hope to talk to you soon. From Nidia.”
Well, again, similar to the previous question and similar to talking about BIPAP ventilation with tracheostomy at home, this is again, bread and butter for Intensive Care at Home to take patients home if they’ve been stuck in ICU for weeks or for months on end to continue treatment at home, to continue weaning patients off at home, rather than in a non-family friendly intensive care unit, where people are stuck often in a cubicle, in a box with no natural daylight. ICUs are noisy, busy, people can’t rest, families can’t rest. Families are living in ICU day and night. It’s just not a conducive environment.
Moreover, ICUs in particular when they had a long-term patient in there, get desensitized. They no longer pay a lot of attention to what those patients really need. They need a dedicated team around them that can really understand them and get to know them and have a regular team build around them, and that is much more possible at home, compared to an ICU environment. So again, Nidia, give me a call next week on one of the numbers on the top of our website or just send me another email to [email protected].
Now, other questions that came in this week. There’s a question from Shawn who says, “What areas of the U.S. do you work in? I’m starting to look into care at home for my elderly father who’s on mechanical ventilation with the tracheostomy. He lives in a town about 60 miles West of Chicago, Illinois, USA.” Shawn, unfortunately, we are still not in the U.S. We had plans to go there this year, but it’s not going to happen yet. We are so busy in Australia at the moment, that we have to put it on the back burner for now.
Here’s what I would recommend you to do anyway. Again, contact me this week and give me a call on one of the numbers on the top of our website or send me an email to [email protected]. I would like to know more about your dad’s situation. Your low hanging fruit if you’re in the U.S., is to let you help us to advocate for your dad in ICU and give you a second opinion, map out the care plan, and let us help you to wean him off the ventilator by holding intensive care teams accountable and by giving you a second opinion.
A lot of ICUs in the U.S. have become so complacent. All they want to do is send off patients to LTAC, rather than looking at what’s best for them at home or looking at what’s best for them in ICU and wean them off the ventilator and then trach as quickly as possible. They have the skills, they have the know-how, but they have become very complacent because they know there’s an LTAC wanting to take these patients on the other end. But we also know that LTACs are not a good option for patients at home at all. So, that’s my recommendation here, Shawn.
Let’s move along to some other questions that have come in during the week. Another question that has come in this week is from Chelsea, “My aunt had a fall and hurt her head and had surgery to drain the blood in the brain since she had internal bleeding. So, she passed out for a while. Then, right before the ambulance took her, we were kind of talking to her and she was responding.
After the surgery they put her in an induced coma for two weeks. Then they said, “Give her a few days to wake up”, but she didn’t because then they put her back to sleep again because she needed a ventilator on her neck. Then they said, “Give her another few days.” Then again, they put her back to sleep. They needed to put a feeding tube through her stomach, also known as a PEG tube. So again, they said, “Give her a few days.”
She’s been in and out of the hospital from the therapy home where they supposedly have her recovering. She ends up in the hospital because her sodium was low or she had kidney failure. Then another time she developed pneumonia. It’s been since June 2nd, and she still hasn’t woken up. I know at this point she’s in an actual coma, but my question is, if she was being responsive after the injury, then she had the surgery in place in an induced coma, what could have gone wrong? Shouldn’t the doctor know why she’s not waking up? When we ask, all they say, “It’s up to God now for her to wake up.” I would think that they would be able to see what’s going on, but I don’t know any other people who have gone through this. Do you have any suggestions?”
Well, thanks Chelsea for sharing your aunt’s situation. So, here’s what I can see with what you’ve shared with me. I keep saying over and over again, I’ve been saying it for many, many years, 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. For me, these are simple questions, but it’s another sign that families in intensive care really have absolutely no idea what to do in situations like that.
So, the answers to you are rather simple here. They should have, and they most likely have done a CT scan of the brain or an MRI scan of the brain, and some of your answers are lying into the CT or the MRI scan of the brain. Does it show brain damage? If she had a fall and she had head surgery, does she have brain damage? Potentially irreversible brain damage. Now I don’t know, but this is exactly what’s going on here.
Now, if she’s been in and out of a coma, another thing that you should be looking for there, Chelsea, is, what medications does she have? Is she on sedation? Is she on opiates? If she’s not on sedation, if she’s not on opiates, is she on anti-epileptic drugs such as Phenytoin or Dilantin, such as Keppra, such as Epilim, such as opium and others that potentially keep her sedated. If she’s not on any anti-epileptic drugs, if she’s not on any opiates, if she’s not on any sedatives, chances are, she has got some significant brain injury, and they haven’t told you or you seem to haven’t asked the right questions. Now, what you should be doing here is get access to the medical records. Get a second opinion and you can contact us here at Intensive Care at Home and intensivecarehotline.com for a second opinion.
Furthermore, you are talking about that your aunt had a PEG tube. Now again, I’m not sure whether that was needed. I don’t have enough information here. Does she still have a tracheostomy? You’re talking about months down the line here. You’re talking about June 2nd, we are now in October 2023. You haven’t said anything about that she’s still on a ventilator. But in any case, because your aunt has been in and out of hospital since this all happened, she probably will benefit from Intensive Care at Home to keep her at home predictably. The critical word here is predictably.
With Intensive Care at Home for example, we have a KPI, a key performance indicator to have no non-elective readmissions back to hospital and to ICU, because that is critical for our clients. It’s also critical for the hospitals if we make that promise of Intensive Care at Home. That promise is kept and people stay at home predictably because that’s where they want to be. So Chelsea, I hope that answers your question here, what to do next.
Let’s go to the next question from Angela. “My mom is in ICU being brought in and out of an induced coma due to his agitated state and convenience due to hospital board rounds visiting times. Not based on patient need. I don’t know how to protect my mom.” And that’s from Angela. Angela, thanks for sharing this with us here.
So, what is often happening when a patient is coming in and out of an induced coma and they’re agitated? I tell you what’s often the missing link. Assuming there’s no brain injury, it’s different for patients with a brain injury. It’s more difficult to get patients with a brain injury out of an induced coma. But assuming your mom doesn’t have a brain injury, it is often as simple as doctors and nurses, talking patients through the waking up process.
When patients wake up after an induced coma and they have a breathing tube in their mouth, it’s a terrible situation because patients wake up, they have a tube in their mouth, they can’t talk, they have no recollection often what’s happened in the last few days. So, imagine you’re waking up from an induced coma, you can’t talk, you have no recollection of what’s happening. It’s really important that doctors and nurses and also family members can reassure patients at the bedside, talking them through what’s happening and almost gently walking them through the weaning off the ventilator process.
Now, if there’s issues around timings of ward rounds, if there’s issues around timing of visiting times, that’s definitely concerning because, (A), if there’s a ward round, well family members should be able to participate. What is it that a family member can’t hear in a ward round? If anything, I think family members should contribute to a ward round because they know their loved ones best. We need to stop looking at patients, just isolating them on a clinical perspective. We need to include the families and listen to what they have to say, what their loved ones are like, what’s their personality like? What do they respond to? What do they want? What are their wishes and so forth.
In regard to visiting times, if an ICU has limited visiting times, what is it that they have to hide? It’s 2023. Why can’t you be there with your loved one holding their hand, talking to them? What is it that you can’t see in an ICU? COVID is over, where ICUs locked out families out of ICU and that was the worst time ever. So, if there’s limitations around visiting times, again, what is it that you can’t see? What do they have to hide? I’ll let you answer that question.
I agree with you that it’s often convenience for the hospital to keep a patient tube. It’s often hard work to wean someone off a ventilator. That’s hard work talking them through the weaning process. No question about that. It takes a lot of work, it takes a lot of controlling. It’s a real skill weaning someone off the ventilator that’s getting agitated, confused, potentially aggressive, and that only comes with experience. Only comes with experience. It’s a real skill titrating opiates, sedation to the right point where it’s not too much and you can still wean them gradually taking it off. It only comes from years of experience and practicing, unfortunately. So, Angela, I hope that helps.
But you know what you should be doing in a situation like that as well, you should be reaching out to us here at intensivecarehotline.com as well, so that we can help you with this situation, that we can give you the second opinion, that we can talk to intensive care teams, that we can be the voice for your mom, that we can advocate for you like we’ve done for hundreds of clients over the years, getting real results for them.
If you go to our sister site at intensivecarehotline.com, just have a look at our testimonial section or have a look at our podcast section where we interviewed clients or where I interviewed clients and talked about their results. We have saved lives by helping families in intensive care all over the world by advocating for them and just understanding intensive care inside out, knowing the games that intensive care teams play, knowing their agendas and counteracting them.
Next question comes from Shelly. Shelly says, “My dad is in ICU. He’s ventilated, needs wound care for pressure sores. He’s on dialysis, he’s got a nasogastric tube and he’s getting fed through that and he’s gotten anoxic brain injury. What should I do?” Thanks, Shelly for your brief email here. Sounds to me like your dad is very sick in ICU there with mechanical ventilation, pressure sores, dialysis, nasogastric tube, and anoxic injury.
So, what you should be doing here is, (A), ask all the right questions. So, when you look at our website, intensivecarehotline.com, we have a section there where we give away for free what questions to ask when someone is in intensive care. But you can ask all the questions that are for free on our website by the same token. If you and I were to get on the phone with the doctors and nurses, I will ask all the questions that you haven’t even considered asking.
The good news there is, depending on the answer, I can then ask the next question and it goes very fast, because I’ve worked in intensive care for over 20 years in three different countries where I also worked as a nurse unit manager for over five years. So, it really comes down to getting to the bottom of things very quickly, and I can get that from intensive care teams very quickly. We also look at medical records and give you a second opinion. We can drill down very quickly in those situations.
So, with ventilation, wound care dialysis, tube feeding, anoxic brain injury, my first question would be, has there been a CT scan of the brain done? Has there been an MRI scan done of the brain? Has there been an EEG done of the brain? Why does your dad have an anoxic brain injury? Why is your dad on dialysis? Is it for acute kidney failure? Is your dad a long-term dialysis patient? Why does he have wounds? If he has pressure sores, it sounds to me like your dad might have been an inpatient in ICU for quite some time. Because usually pressure sores develop over time, but they shouldn’t develop in the first place and it is negligent if your dad has pressure sores in ICU. Absolutely negligent.
So, you’re giving me an incomplete picture here, Shelly, that I could piece easily together if I could talk to you first and then talk to doctors and nurses directly, look at medical records, then I can piece a picture together and also advise, (A), what questions do we need to ask and also hold intensive care teams accountable to move things forward for your dad. You also haven’t shared, does your dad have a tracheostomy? How long has he been in ICU? How many days has he had ventilation for? How many days has he had dialysis for? With the anoxic brain injury, does he have seizures? If he has seizures, is he on anti-epileptic drugs? Is he still in an induced coma? Is there any purposeful movement? Is he obeying commands? A lot of questions. What are blood results? What are x-ray results? What are CT scan, MRI scan results? And the list goes on. So, I can only encourage you to reach out to us either at intensivecarehome.com or at intensivecarehotline.com.
Let’s move on to the next question from Donna. Donna says, “My sister has been placed on ECMO for pneumonia. She’s currently been receiving ECMO treatment for five days. They tried to wean her sedation yesterday, but her saturations and respiratory rate dropped. Is this normal? Will she be strong enough to come off?” Great question, Donna. So when someone is on ECMO, ECMO stands for extracorporeal membrane oxygenation. It’s also known as a bypass machine. Basically, ECMO can take over the function of the lungs and the heart for a period of time. In this situation, your sister has gone on ECMO for the pneumonia. So, ECMO is meant to take over the function of the lung for a period of time, so that the lungs can recover.
So basically, the reason someone ends up on ECMO for respiratory failure/pneumonia is that a gas exchange in the lungs is no longer feasible. The lungs have shut down to a point where an adequate gas exchange compatible with life is no longer achievable. Therefore, you place someone on ECMO and ECMO will take over the function of the lung. Gas exchange is actually taking place outside of the body in the ECMO machine. So, that gives the lungs time to recover.
So, “She’s been receiving ECMO for five days. They tried to wean her sedation yesterday, but her saturations and respiratory rate dropped.” That means it looks like she’s not quite ready to wake up yet. Now, if she can’t wake up, it’ll be difficult to wean off ECMO, not impossible, but similar to the question before from Angela, where Angela said, “How can I get my mom out of sedation? How can I help her to wean off the ventilator?” It’s not dissimilar here that it takes a lot of patience. It takes a lot of skill, takes a lot of TLC and talking patients through the process. Again, it’s a bit of an art and a skill, rather than just a simple process.
Another approach here might be, Donna, that your sister needs to be weaned off the ECMO first and she doesn’t need to wake up for that. Once she’s weaned off ECMO and she’s decannulated from ECMO, then they can focus on waking her up. Then they don’t need to worry about weaning her off ECMO and sedation. Then they can focus on weaning her off sedation. Yes, she’ll still have a breathing tube, but then they can work towards extubating her step-by-step.
You’re asking also, is this normal? That’s a good question. I have seen many times in ICU that weaning someone off ECMO is difficult. Weaning someone off ECMO is difficult or can be difficult, especially if patients have been in a prolonged induced coma.
Now, you’ve mentioned she’s been receiving ECMO treatment for five days, but she might’ve been intubated and ventilated for 10 days before then. The longer someone is in an induced coma and sedated, the more difficult it can be to wean them off ventilation and get them out of the induced coma. Similar to the example that I gave earlier, it can take time. It can take a long time to wake up after an induced coma, even if sedation has been off.
So, also when patients are on high doses of opiates such as morphine, fentanyl, hydromorph, Dilaudid, they might get addicted to it and then they might go through a withdrawal process when you wake them up. So, it could simply be that your sister is withdrawing from opiates. The same is applicable for certain sedatives. Some patients in ICU get Precedex, they get propofol, or they get midazolam/Versed. Now, Precedex and Propofol are generally speaking, not addictive in nature. But midazolam or Versed is.
Now, if your sister has been on midazolam or Versed set for quite some time, once again she might be going through withdrawal. Simply, if she’s not waking up or if she’s dropping her saturations and respiratory rate, is she potentially going through withdrawal? Do they need to manage a withdrawal situation?
Again, 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.
You are also right in saying, will she be strong enough to come off? Now, the biggest problem for a ventilated patient in ICU is simply that the longer they’re ventilated and the longer they are in an induced coma, the weaker they get. Muscle deconditioning is real if they stay in an induced coma for too long. Imagine someone’s tying you down to a bed for weeks on end or for days on end, of course you’re losing your muscle strength and it’s the same here. So, the sooner you can get someone out of an induced coma, the sooner you can make them less dependent on life support, whether it’s ECMO or a ventilator, the higher chances for recovery. So, every day really counts. Everyday really counts.
So, what you should be asking for Donna for now is, what do chest x-rays look like? What do arterial blood gases look like? Depending on that, can they wean her off ECMO? If she’s weaned of ECMO, can they then start getting her out of the induced coma and then wean her off the ventilator? So it’s almost like, they’re trying to do two things simultaneously, whereas the better approach might be to do it step-by-step. Wean off ECMO, then wean off ventilator and get her out of the induced coma. So that’s my advice here.
Also, if she can’t be weaned off the ventilator and the ECMO for now, does she need a tracheostomy? Because that might also help them to lower sedation. Once someone has a tracheostomy, it’s easier to lower sedation because a tracheostomy is easier to tolerate as opposed to a breathing tube in the mouth. The challenge on ECMO often is that, ECMO patients are on heparin. Heparin is a blood thinner. Heparin is needed for ECMO patients because the risk of a blood clot on ECMO is much higher than for other therapies. Then when someone is on heparin, it’s difficult to do a tracheostomy because the risk of bleeding is high. But can you see why intensive care is such a highly specialized area and why it’s critically important that you have someone that can ask the right questions for you.
Let’s move on to the next question. In the meantime, if you have any questions, type them into the chat pad. If you want to come onto the show, I can send you a link. You can ask questions here by talking to me directly. I can send you the link or you can just type it into the chat pad.
Then, I have another question here from Gracious, who says, “Thank you for your work, education videos and advocacy. It is crucially needed as a majority of the population is ageing and lots of us with ageing parents don’t have many reputable resources to turn to. From Gracious.” Well, thank you Gracious for your compliment here. I’m trying my very best to educate as many people as possible, so that they can make informed decisions, have peace of mind, control, power, and influence.
Let’s move on to the next question. Again, in the meantime, if you have any questions, type them into the chat pad or if you want to come onto the show and ask directly here, I can send you the link. You don’t need to go on camera.
So, let’s move along to the next question from Alison. Alison says, “They want to stop care of my fiancé, Steve, from next week because of oxygen starvation. They say he knows nothing, but I connect to him. Please help me. I have to fight for him to be given the chance to wake up after the tracheostomy was fitted two weeks ago. From Alison.” Alison, in a situation like that, if they’ve done a tracheostomy already, that’s a good sign because normally what ICUs do is, often they give patients and families, they say, “Well, we either do a tracheostomy or we stop life support.” That’s often what we see when we consult with clients directly. So, I’m not sure why they would want to not continue treatment after the tracheostomy was fitted two weeks ago.
Now, obviously, maybe things have taken a turn for the worse. I don’t know. You haven’t shared that. But just because someone has had oxygen starvation and potentially in anoxic or a hypoxic brain injury, there’s plenty of people living with hypoxic or anoxic brain injuries and they want to live. So as you’re well aware, ICUs are often negative by default and they’re going to be negative even though things are improving for patients. So, it’s a bit strange to me that all of a sudden, they’re giving you doom and gloom, because by doing a tracheostomy in the first place, they must have seen some road forward for recovery for your fiancé, Steve.
The number of times we’re working with clients, one-on-one and ICUs are negative and are doom and gloom and things keep improving for patients and for families, they’re still doom and gloom. Why is that? Well, it’s quite frankly because it’s all about their liability. So, here’s how that works. Let’s just say, you or your loved one goes into ICU with a condition. ICU would tell you, “Oh, we’re doing X, Y, and Z for the next week, and then your loved one will be leaving intensive care and recover the week after.” Then, it doesn’t happen. Well, you could potentially sue them.
So, a lot of their talk is about managing their downside, which is managing their liability. So, I often say that even though things keep improving for your loved one, they will remain negative because, again, to manage their downside and their liability, so that it’s easy for them to say if things don’t turn out as you plan them to turn out, they can say, “Oh, well, I told you so. I told you your loved one is not going to recover.” So, most important part here is look what’s actually happening, not what they’re saying. Look at what they do, look at what your loved one does, not what they’re saying.
Keep in mind, 90% of intensive care patients approximately survive. So, because they survive, 90% survive, the odds are in your loved one’s favor. Never forget that. So, don’t look so much at what they’re saying, look at what is happening in reality.
Now also, if they want to remove treatment from your fiancé, Allison, the quickest way here for you to make informed decisions, get peace of mind, control, power and influence is for me to talk to them directly. Why is that? Because they’re so negative, I can counteract that negativity by giving you a dose of reality and giving them a dose of reality by asking the questions that you haven’t even considered asking, but must be asked to turn this situation around, number one. And so that you can make informed decisions, have peace of mind control, power, and influence. Critically important that you have someone on your team who can advocate for you on a clinical level.
We’ve turned so many situations around. I’m not exaggerating here when I’m saying we’ve saved lives in ICU with our consulting advocacy. Despite ICU teams wanting to withdraw treatment, we’ve stopped so many ICU teams from doing that by knowing our subject really, really well. Again, similar to Intensive Care at Home, we employ decades of ICU nursing experience. We know the lay of the land, we know about patient’s rights, we know about what clinical questions to ask, and we know about how to turn situations around. So, no need to despair here, Alison. Absolutely not. Just reach out to me and then we can take the next steps together.
I am going to wrap this up in a second. I want to thank you all for coming on to the show. I want to thank you all for your support. Again, if you’re watching this on replay, thanks to you as well. Just type your questions into the chat pad even after the replay, then I can make a video about it or do another YouTube live.
Just again, to summarize, with intensivecareathome.com, we provide a genuine alternative to a long-term stay in intensive care, predominantly for long-term ventilated adults and children with tracheostomy, but also for BIPAP, CPAP, non-invasively ventilated patients, but also for patients that are not ventilated, but have a tracheostomy. We also provide home TPN. We provide home IV infusions including potassium infusion, magnesium infusions, IV antibiotics. We also provide care nursing care with intensive care nurses for patients that are medically complex, that are not necessarily ventilated. But we often do seizure management, PEG management, nasogastric tube management.
We also currently provide an emergency department bypass service for the Sydney West Local Area Health District. With that ED bypass service, we send our critical care nurses into the home to keep the Sydney EDs empty, and we can do the same for your ED and for your hospital. So, please contact us for that.
Once again, if you have a family member in ICU that wants to go home, or if you are watching this and you are in ICU yourself, please contact us. Contact us on one of the numbers on the top of our website at intensivecareathome.com, or simply send us an email to [email protected].
If you are at home already and you have insufficient support, insufficient funding, please contact us as well. We also provide Level 2 and Level 3 NDIS support coordination if you have insufficient funding. If you’re NDIS support coordinator, doesn’t know how to get to nursing funding through the NDIS, please contact us.
We also are a TAC (Transport Accident Commission) approved service provider in Victoria, iCare New South Wales, NIISQ (National Injury Insurance Scheme in Queensland), DVA approved service provider, department of Veteran Affairs. We also have received funding through public hospitals and departments of health, so please contact us with all of that.
If you are an NDIS Support Coordinator and you’re looking for a top-notch solution for your NDIS participant that needs nursing care, please contact us. If you think your NDIS participant does need nursing care, but you have no experience in advocating for it with the NDIS, please contact us as well. We can do a nursing assessment, we can help you with the advocacy because we have extensive experience with the advocacy.
If you are a critical care nurse working in ICU and you know of bed blocks in ICU, you know of patients that need to go home, want to go home, please contact us as well. We are currently also hiring critical care nurses for the community in Sydney, Melbourne, Brisbane, as well as regional and rural areas in Victoria and New South Wales and Queensland. If you are an intensive care specialist and you want to help your patients to go home or you’re looking for a career change, please contact us as well. We are currently expanding our medical team as well.
If you like my videos, subscribe to my YouTube channel for regular updates for families with Intensive Care at Home, as well as families in intensive care. Click the like button, click the notification bell, comment below what you want to see next and what questions and insights you have. If you want me to do a certain video about a certain topic, please let me know. Also, share the video with your friends and families.
Thank you so much for watching.
This is Patrik Hutzel from intensivecareathome.com and intensivecarehotline.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.