Podcast: Play in new window | Download

Hi it’s Patrik Hutzel from INTENSIVE CARE AT HOME where we provide tailor made solutions for long-term ventilated Adults & Children with Tracheostomies and where we also provide tailor made solutions for hospitals and Intensive Care Units whilst providing quality services for long-term ventilated patients and medically complex patients at home, including home TPN.

In last week’s blog, I talked about,

HOW WE SELECT STAFF AT INTENSIVE CARE AT HOME & HOW WE INTRODUCE THEM TO & KEEP THEM WITH OUR CLIENTS!

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

https://intensivecareathome.com/how-we-select-staff-at-intensive-care-at-home-how-we-introduce-them-to-keep-them-with-our-clients/

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

What are the Long-Term Effects from a Tracheostomy Besides Being Alive? Live Stream!

 Hello and welcome to another Intensive Care Hotline and Intensive Care at Home livestream. Thank you so much for coming on to the show.

Today’s topic is, “What are the long-term effects from a tracheostomy besides being alive?” This is actually something that was requested on our last livestream. I thought I’ll dive right into it today.

Now, before we go into today’s topic, you might wonder what makes me qualified to talk about today’s topic. Again, my name is Patrik Hutzel. I’m the host of the show, founder of Intensive Care Hotline and Intensive Care at Home. I am a critical care nurse by background. I have been working in intensive care for over 20 years in three different countries where I have also worked as a nurse unit manager in intensive care for over five years.

I have been consulting and advocating for families in intensive care all around the world for the last 10 years as part of my intensivecarehotline.com consulting and advocacy service. I’m also the founder and managing director of Intensive Care at Home where we provide an intensive care substitution service at home for predominantly long-term ventilated adults and children with tracheostomies, but we also provide services such as home BIPAP (bilevel positive airway pressure), home CPAP (continuous positive airway pressure),  home TPN (Total Parenteral Nutrition), and IV fluids at home. Anything that requires a critical care nurse at home, we provide at Intensive Care at Home.

Currently with Intensive Care at Home, we are operating all around Australia, in all major capital cities, including rural and regional areas. We are just about to start out in the U.S. as well, but I have more to say about that in the next few weeks.

Now, please type your questions into the chat pad if you want to. Any questions, type them into the chat pad. If we have time later in the presentation, I can also take phone calls. If you have any questions, you can dial in live, but it depends how far we go and how many questions we have coming in through the chat pad and how we go with today’s presentation.

Now, what are the long-term effects from a tracheostomy besides being alive? Well, let me just start with that the goal of anyone in intensive care, let me make that abundantly clear here. The goal for anyone in intensive care when they’re in intensive care, on a ventilator with a breathing tube, should be to wean them off a ventilator, take them off the ventilator, and take out the breathing tube, that should be the ultimate goal for anyone in intensive care full stop.

Now, because I do believe there’s also this notion that if someone is in intensive care on a ventilator with a breathing tube that maybe a tracheostomy is automatically the next step. Absolutely not. Absolutely not. The goal is always to avoid a tracheostomy.

If you’re watching this because you are thinking that your loved one might need a tracheostomy, okay, but the first question is, has the intensive care team done everything beyond the shadow of a doubt to get your loved one off the ventilator and the breathing tube? That is the most important question before you are even asking a question such as “What are the long-term effects from tracheostomy besides being alive?”

Now, case in point, I was on a call actually earlier today with a client who is kind of in a situation where maybe a tracheostomy is the right next step, maybe end of life is the next step, but the client also said, “Well, we don’t want to move towards end of life. We are very pro-life. Is a tracheostomy our only option and will that keep my dad alive?” Yes, it will keep your dad alive most likely. Assuming there are no other complications such as cardiac arrest or any other complications that may occur, yes, it will keep your dad alive.

What’s the alternative? Well, the alternative might be to move towards end of life, but then what does that look like? Does that mean actively removing treatment? Does that mean potentially giving sedatives and opiates for comfort care? Is that the next step? What are people’s beliefs? Because, again, the client says, “We are very pro-life and we believe in life under any circumstances.” Then maybe a tracheostomy is the right next step.

That was to set the scene about that a tracheostomy is definitely nothing you should need in ICU, but there is a small proportion of patients where tracheostomy is the right thing to do. Tracheostomies have their time and their place. The question is, is it the right time and place for you and your family?

So, let’s move more towards what are the long-term effects from a tracheostomy? Again, let’s look at the best-case scenario. What’s the best-case scenario? Let’s just say the tracheostomy is unavoidable. Look, there are numerous articles on our website whether tracheostomy is unavoidable or not such as, “How long can someone leave a breathing tube in before having a tracheostomy?” That’s one highly frequented article and video on our website. “How long can a breathing tube stay in before a tracheostomy is necessary?” “How long can someone stay in an induced coma before a tracheostomy is necessary?” Other articles are such as, “What are the risks and benefits of a tracheostomy?”

Another article that I recommend or video, we always do videos and articles, another article/video I recommend is, “How to wean someone off a ventilator and a breathing tube?” because if that can’t be done for whatever reason, and I’m not going into the reasons today because I’ve done countless videos about the reasons why someone can’t be weaned off a ventilator, so then a tracheostomy might be the right next step. I assume when you’re watching this, you already know that a tracheostomy is the only thing to do for your loved one. If you are still in doubt, go back to the other articles and videos when a tracheostomy is necessary.

Again, let’s assume tracheostomy is the only option for your loved one. If your loved one needs a tracheostomy, the goal should still be to wean off the ventilator and have the tracheostomy removed as quickly as possible. Let me repeat that again. The goal of a tracheostomy should still be for most patients to wean off the ventilator as quickly as possible and have the tracheostomy removed full stop.

Now, there are exceptions to the rule, of course. The exceptions are patients, for example, with a spinal injury like C1, C2 spinal injuries, in order to prolong their lives, a tracheostomy is necessary, assuming that’s what they want, assuming that’s what the families want. That can prolong their lives indefinitely with a ventilator. That is a given.

Other patients where a tracheostomy is the only alternative going forward is MND, motor neuron disease. We have patients with Intensive Care at Home with motor neuron disease that live at home on a ventilator with a tracheostomy. They have 24-hour intensive care nurses at home because otherwise, those patients would be in intensive care instead, blocking an intensive care bed, having no quality of life, whereas if they’re at home they have quality of life, and the intensive care has an empty bed. Win-win situation.

Same with C1, C2 spinal injuries, they have tracheostomy, they have a ventilator, and they’re at home with Intensive Care at Home with 24-hour intensive care nurses because otherwise, those patients would be stuck in intensive care, having no quality of life. Again, at home, they have quality of life.

Next, you can already see there needs to be distinction between what’s the long-term goal of a tracheostomy. Well, the short-term goal is to get someone off a ventilator, if possible, get the tracheostomy removed. You can already see that you’ve got to go down the rabbit hole of (A), let’s just take someone in intensive care.

Let’s just say someone had a pneumonia in intensive care. For whatever reason, they had to stay in an induced coma for much longer than anticipated. Now they are weak, they’re deconditioned, they ended up with a tracheostomy. For someone like that, the goal should be to build their strength up as quickly as possible and wean them off the ventilator and take the tracheostomy out as quickly as possible. That should always, always be the goal.

Again, if someone is in an unfortunate situation such as C1, C2 spinal injury, motor neuron disease, cerebral palsy, but there’s also patients like with an ABI (Acquired Brain Injuries) that have a tracheostomy or a ventilator. Tracheoesophageal fistulas, we’ve had that as well. We’ve also had some premature babies going home with a tracheostomy. For those types of patients, a tracheostomy can also be a short-term measure.

Let’s just look at what’s the goal? What are the long-term effects of a tracheostomy besides being alive? One of the long-term effects, especially for our Intensive Care at Home clients is, they can go home from intensive care, and they can live a good quality of life or, in some instances, quality of end-of-life, palliative care at home, assuming that’s what patients want, but that is what most patients and families want. They don’t want to have end-of-life care in an ICU. You can already see that there are different pictures to paint for different scenarios. It’s not a one-size-fits-all. You’ve got to understand intensive care. You’ve got to understand Intensive Care at Home to really give advice on what might be best in unique circumstances.

So, long-term effects for someone with a tracheostomy, like I just mentioned, C1, C2, MND, cerebral palsy, ABI, Guillain-Barré syndrome, and there are many others, COPD (Chronic obstructive pulmonary disease), asthma, pulmonary fibrosis, many other conditions. Well, the long-term effects are very positive because people can go home with critical care nurses, 24 hours a day, similar to an ICU, with a difference that people are looked after at home instead of an ICU and patients and families can have control back because in an ICU, they have no control.

Now, those are what I would almost argue the mental health aspects and long-term mental health effects from a tracheostomy because the long-term mental health effects from a tracheostomy in an ICU is often depression, no quality of life. That’s certainly not what you are aiming for.

Next, other long-term effects are obviously that with the tracheostomy at home in particular, you need that 24-hour intensive care nursing team. With that 24-hour intensive care nursing team, you can finally leave intensive care, probably after many weeks, sometimes, often many months. That’s the benefit. It’s also a benefit for the hospital, for the ICU. They can finally free up a bed and give their patients and families choice and control.

Not many ICUs can give their patients choice and control, but if you’re watching this and you are an ICU doctor, ICU nurse, now you know there’s choice and control for patients and families and there’s choice and control for intensive care units by using our service, Intensive Care at Home. Once again, it’s a win-win situation. We’re cutting the cost of an intensive care bed by around 50% and we are giving patients and families a choice. We’re giving hospitals and intensive care units choice and control because you don’t want to be in an ICU, you want to be at home, ideally.

Your next question is probably, “Well, who’s going to pay for it?” Well, in Australia in particular, and we are predominantly still only operating in Australia. Our clients are funded predominantly by the NDIS, by the National Disability Insurance Scheme. Also in Victoria, funded by the TAC, the Transport and Accident Commission. All around the country, we are funded by the DVA, by the Department of Veteran Affairs. In New South Wales, we are also an iCare-approved provider. In Queensland, also NIIS (National Injury Insurance Scheme), but obviously the NDIS is a national scheme. We have also received funding through DHHS, Department of Health and Human Services on a state level. So, funding sources are there.

Now, let’s talk about the logistics and the long-term effects from a tracheostomy at home. Again, you need that critical care nurse, 24 hours a day, that can manage the tracheostomy and the ventilator. It’s a skill that no registered nurse without intensive care experience can manage. It’s a skill that certainly no support worker can manage.

To illustrate my case, we’ve had clients in the past in the earlier days of Intensive Care at Home where the NDIS in particular was only funding night shifts for NDIS participants with a tracheostomy or a ventilator and weren’t funding day shifts, and during the day, those clients were left to their own devices with family members or support workers. We predicted at the time that if funding wasn’t made available for an ICU registered nurse for these clients, that those clients are at risk of passing away during the day because the medical emergencies could not be managed by families, support workers, or even general registered nurses without ICU experience.

Unfortunately, this became a reality just as we predicted at the time and three NDIS participants passed away within a short period of time during times when the NDIS wasn’t funding an ICU nurse.

The NDIS really has lives in their hands, and they’ve been acting very, very negligent. A five-year-old, a 17-year-old, and a six-year-old participant passed away at the time. Again, two of them were children. The NDIS really needs to look at their practices, which in those cases were negligent. Those are also long-term effects from a tracheostomy, but by the same token, for the overwhelming majority of our clients, we have 24-hour nursing care funded through the NDIS and those clients are at home predictably. That’s a big differentiator.

Now, the long-term effects are from a tracheostomy as well as most patients can’t eat or drink. Some patients can’t talk. Most patients, as a matter of fact, can’t talk. In order to talk with a tracheostomy, generally speaking, you have to use a Passy Muir valve, but that can only be used if someone is not ventilator dependent. If someone is on a tracheostomy without a ventilator, they might be able to use the Passy Muir valve attached to the tracheostomy and tracheostomy cuff needs to be down. I have seen very few patients that can eat with a tracheostomy, but they are there. Those patients do exist where they can eat even with a tracheostomy.

Next, other long-term effects are with a tracheostomy a patient needs frequent tracheostomy suctioning to maintain a clear airway. Other long-term effects are that the dressing of the tracheostomy needs to be changed twice a day at least to maintain the tracheostomy site and the lungs clear from infection.

Next, many tracheostomies have an inner cannula. I do have a tracheostomy that I can show you. This is what a tracheostomy looks like. Some tracheostomies have actually an inner cannula. This particular tracheostomy that I’m showing you here doesn’t have an inner cannula, but there’s often an inner cannula for many tracheostomies that needs to be changed, again, at least two, three times a day in order to maintain the patency of the airway. Sometimes that inner tube can get clogged and can block, really leading to a respiratory arrest.

Again, that’s why you can see what I’m saying that a tracheostomy client at home needs to have an intensive care nurse, 24 hours a day, to maintain the patency of an airway. That’s just one of the many skills an intensive care nurse needs to have, but it’s also a lifesaving skill. Some patients don’t have an inner cannula with the tracheostomy. It often depends on do those patients have a lot of sputum production? Do they need suctioning frequently? Do they have the assistance of a cough assist? If a cough assist is being used on a regular basis, they may not necessarily need an inner cannula because the airway patency is not guaranteed, but it’s less likely to block with a cough assist tube.

Now, next, what are other long-term effects? I mentioned the cough assist. Yes, some tracheostomy clients need a cough assist to make sure airways aren’t collapsing, to make sure that they’re not developing pneumonia, they’re not developing atelectasis, especially if they have the inability to breathe. Most patients with a tracheostomy and a ventilator can’t breathe. They sometimes need a cough assist machine to give them a high PEEP (Positive end-expiratory pressure) and also a negative PEEP to prevent pneumonia, atelectasis, chest infection, to inflate the lungs properly, which many of our clients can’t do by themselves.

Now, what are other long-term effects from a tracheostomy? Other long-term effects from a tracheostomy are obviously increased infection risk because the airway is more or less open, there’s no natural barrier, and that’s why the tracheostomy needs to be cleaned two, three times a day. Inner cannulas need to be changed. The hygiene around a tracheostomy is really important and, again, that cannot be done by a support worker or even by a general registered nurse.

Other long-term side effects are a tracheostomy is an unstable airway. It’s an artificial and an unstable airway. Well, again, that’s why you need the critical care nurse, 24 hours a day, in your home to make sure you are safe with that unstable airway.

Also, with that infection risk, that’s why people are needing to go home as quickly as possible, not stay in ICU. The infection risk in ICU is so much higher compared to a home care environment. Why is that? Well, in an ICU you’ve got a large number of sick patients. You’ve got doctors and nurses going from patient to patient, making it very likely that if you’re having just, for example, a pseudomonas infection in bed five and then you come to bed seven, that doctors and nurses are carrying the infection from bed five to bed seven. Then, the likelihood of someone ending up with an extra infection in ICU is so much higher, as opposed to a home care environment, there are not many sick patients or hardly any so therefore you are protected from a nosocomial infection. Nosocomial means a hospital-acquired infection.

It’s really important that you understand the implications around the tracheostomy and it’s important that you understand where is the safest place for a tracheostomy to be looked after. Clearly, in the long run, if a tracheostomy can’t be avoided and can’t be removed, home is the safest place with Intensive Care at Home.

Other long-term effects for a tracheostomy are, God forbid, if someone isn’t ventilated but has a tracheostomy and needs ventilation, it’s really easy to instigate a ventilation because you can just connect someone to a ventilator with a tracheostomy. That’s one of the benefits there. No one hopes that patients need extra ventilation, but it is something that can be done with a tracheostomy being ready to go.

Now, other long-term effects for a tracheostomy, obviously you have this device hanging around your neck, for lack of a better term, and many people might be afraid of going out or they might even be a bit self-conscious about it.

What we do with our clients when they go out, especially if they’re ventilator dependent, we try to cover the ventilator circuits and the tracheostomy. There’s no need for anyone to see what’s going on underneath there. It’s probably a little bit more difficult if you are not attached to a ventilator because what’s more difficult there is because you need to breathe, you can’t really cover it with a scarf or with something, with your clothes because you need good air entry. That’s a bit of an issue or can be a little bit of an issue, but you shouldn’t be self-conscious about it. You should just live your life if you can and not really worry too much about what other people think. I think we are wasting our time anyway to worry about what other people think about us. It’s a complete waste of time.

I think for now, I do believe that concludes our topic for today. If you have any questions around this topic, please type it into the chat pad.

What I want to continue with next is questions that came in during the week. If you give me a second, I will now bring up and go through the questions that came up during the week that we had from readers or clients. I just need to get to them in my email inbox and then I will answer more questions. If you have any questions in the meantime, you can just type them into the chat pad. There we go.

First question that came in from Kayleigh this week was, “My mother is being weaned out of the coma but still not able to follow commands. We are afraid for brain damage. It’s been 10 days.” That’s from Kayleigh.

Okay, Kayleigh. A lot of the answers to your question depends on what sedation has she been on? How long was she on sedation? Have they done a sedation vacation, i.e., have they stopped sedation for a period of time to assess your mother properly? For example, this morning, I was talking to a client who’s in somewhat of a similar situation. They are now at Day 14 in ICU after cardiac arrest and potentially anoxic brain injury, and the patient is still on sedation where one of my first questions to the client was, “Well, did they stop sedation at least for a couple of days to make a proper neurological assessment?” She didn’t know. The client didn’t know, but we are now looking at the medical records to find out because if they haven’t done that and they’re now telling the family that a tracheostomy is the only option, I argue they’re skipping a step.

They’re skipping one step by not stopping sedation and making a proper neurological assessment, which is really very important. Only then can one confidently say that not waking up is because of a neurological condition, which leads me back to your email, Kayleigh, where you’re saying, “We are afraid for brain damage.” If someone has been off sedation three, four days and they’re not waking up and assuming they have no brain damage, which they can find out by doing an MRI scan of the brain, by doing a CT scan of the brain, only then can you say whether or can you move to the next steps.

If someone is not waking up, assuming they have no brain injury, they’re not waking up three, four days off sedation, then you got to move towards a CT scan or an MRI scan of the brain or an EEG to work out, is there brain damage or is there no brain damage? Has there been a stroke, God forbid, seizures while a patient was in an induced coma? Kayleigh, you were saying in your email it’s been 10 days. 10 days of what? 10 days in ICU? 10 days in an induced coma? 10 days being off sedation? What do you mean by 10 days? The more specific you can be, the more or the better I can answer your question.

Next, other factors that come into play when someone is not waking up is are they in liver failure? Are they in kidney failure? If they’re in kidney failure or in liver failure, they don’t need to be in full failure, but if liver and kidney function is impaired it also can take longer for someone to wake up, i.e., takes longer for sedatives and opiates to be metabolized in the liver and it takes longer for sedatives and opiates to be excreted through the kidneys. I hope that helps, Kayleigh.

Let’s move on to the next question and came in from Jeanette. Jeanette writes, “My mom needs help. We’ve been trying to get her out of the hospital for over a month. They keep refusing. She doesn’t want a DNR (Do Not Resuscitate) My brother walked in the other night and had DNR written on the door and she’s intubating and they’re asking about a tracheostomy. There are so many things wrong with the medical reports and different diagnosis. I need some help, please. I don’t know what to do.” Well, first off, if she’s intubated, it’ll be difficult to get her out of the hospital even with Intensive Care at Home. For Intensive Care at Home, someone needs to ideally have a tracheostomy to use Intensive Care at Home.

Now, with the DNR, your mom should not have a DNR if she is in ICU unless you asked for a DNR or your mom asked for a DNR, but it doesn’t sound to me like that’s been the case. Putting up a DNR for someone without patient or family consent is illegal and I’ve got nothing to add there besides saying that it is illegal. Wherever you are, whether you are in the U.K., the U.S., Australia, wherever you are, look up your local DNR laws, guidelines. You can’t just issue a DNR without patient or family consent. This is up to you and up to you and your family only.

It also doesn’t quite add up if they are asking for or have issued a DNR and wanting to do a tracheostomy. What do they want? Do they want a DNR or a tracheostomy? I don’t think that the two are compatible. I know some people might disagree there, but I believe you’re either going full throttle towards a tracheostomy without a DNR or you are going towards a DNR and potentially start talking about end of life. Jeannette, if you’re saying there are so many things wrong with the medical reports, well, reach out to us. We can review medical reports. We are reviewing them in real time, and in this day and age you should be able to get access to the medical reports online anyway in no time. I hope that helps, Jeannette, to answer your question.

Next question that came in is from Devin. Devin says, “My husband is currently in ICU in a drug-induced coma due to drinking too much amphetamines, but they are now warming his body and saying he’s stable. How long after this will he wake up?” Well, that’s a good question. Your husband might need to go through some withdrawal first. If he’s dependent or addicted to alcohol or amphetamines, the first thing that they need to work on is going through a successful withdrawal so that when your husband wakes up after the induced coma, he’s not going through a withdrawal and he’s not getting delirious, aggressive, confused, or a combination of all of that before he can wake up.

So, waking up after drinking too much, drug abuse can sometimes not be straightforward, but it also depends. Has the drinking episode been a one-off? Is your husband a regular drinker? Is the amphetamine use a one-off or is that a regular thing that your husband is taking amphetamines? Those are all relevant questions here to consider.

I’ve seen patients in intensive care that are dependent on alcohol or drugs not waking up for a number of days because what happens is you put them in a coma, they’re on a ventilator, then you wake them up and they’re withdrawing. They’re aggressive, they’re confused, they’re combative, and it wouldn’t be safe to take them off a ventilator. Then, you got to re-sedate them, and you go through the whole rigmarole again until they’re finally ready to be weaned off the ventilator.

Now, how can they manage withdrawal from alcohol or other drug substances? One way to manage that is by using medication such as clonidine, by using medications such as midazolam. I have worked in some ICU, bear in mind that’s long time ago, where we’ve given small amounts of IV alcohol to, again, keep a level of alcohol up to not let them go through withdrawal. I think that’s a bit of an old or an old-fashioned approach, but I have certainly seen it. I’m not sure whether that’s still happening in some ICUs, but I have seen it happen. Obviously, more importantly, once your husband gets out of this it’s going to be important to keep him calm, keep him in ICU, and ideally stop drinking or using drugs. I hope that helps, Devin.

Let’s move along to the next question. Next question came from Sandra. Sandra writes, “My brother-in-law was admitted to ICU with infection in both lungs, pneumonia from influenza A, and had to be put into an induced coma. A few hours passed, they said that his kidneys are failing and has been given dialysis. How has this happened? Is this a bad sign?” Let me read through it again. “My brother-in-law was admitted to ICU with infection in both lungs, pneumonia from influenza A, and had to be put into an induced coma. A few hours passed, they said that his kidneys were failing and has been given dialysis. How has this happened? Is this a bad sign?”

It sounds to me like your brother-in-law obviously has gone into ICU with pneumonia. That might have led to sepsis, might have led to low blood pressure, hypotension, use of inotropes and vasopressors to maintain a good blood pressure, and that might have led to kidney failure simply by hypotension or low blood pressure, which means the kidneys weren’t getting enough perfusion, and therefore they went into kidney failure. That’s probably one of the main reasons why this has happened.

Now, the question now is does your brother-in-law need dialysis? It sounds like he’s already on dialysis, which is probably a good thing so the kidneys can recover and then hopefully give the kidneys a few days, optimize his vital signs, optimize his blood pressure, optimize fluid intake as well, fluid intake and fluid output, and then hopefully, he can come off the dialysis machine, clear the pneumonia, and get him out of ICU. Now, that sounds overly simplistic and many other things need to happen as well to make that happen, but that would be the way forward.

Now, you’re asking, “Is this a bad sign that he’s on dialysis?” Well, it’s not a good sign. By the same token, this is what often happens in ICU with critically ill patients, that they go into kidney failure and that they do need dialysis or hemofiltration. Now, most patients in ICU that go into kidney failure, it’s temporary. It’s often temporary. It’s not permanent, and patients after intensive care, often their kidney function is coming back and move on from there. I hope that helps, Sandra. I hope that answers your question.

Next question comes from Susie. Susie writes, “My brother just passed away on June the 12th. He had liver cirrhosis. The ambulance took him Friday, June the 5th. He was talking but saying to the paramedics some crazy things. They spoke of that they had to sedate him because of seizures but after that he never woke up. I just need to know if I’m thinking negative about the whole situation.” Well, Susie, I’m very sad to hear that your brother passed away after liver cirrhosis. It’s hard to say why they had to sedate him and probably put him on a breathing tube. Maybe the liver failure just got him to collapse. What sometimes happens with liver failure is ammonium levels are high and the brain gets foggy and then patients lose consciousness. That might be one of the reasons why he ended up in an induced coma and on a ventilator.

Then, he had seizures for whatever reason. Maybe there were other things happening as well. Maybe he was withdrawing from alcohol. Maybe that’s the reason why he ended up having seizures. “But after that, he never woke up. I just need to know if I’m thinking negative about the whole situation.” Well, I mean, I would be devastated if my brother passed away. I think you thinking negative about it is just part of the process. It’s just part of the process, part of your grieving process probably.

When someone is in intensive care, there are dozens of things happening simultaneously and unless you look at those things and you understand them, there could be many other factors besides liver cirrhosis leading to your brother passing away. That’s why it’s so valuable if we here at intensivecarehotline.com, if we can do a medical record review to get all the answers for you.

If you’re watching this, Susie, we can help you with finding all the answers because your email is too short to even understand what else has happened. Liver cirrhosis is one thing, then often other things that happen with liver cirrhosis is bleeding, blood results are going off, especially liver enzymes. Coagulation results sometimes go completely off, which is why bleeding often occurs. Patients go into kidney failure. There could be so many other things that went wrong that you haven’t shared here where we would need to look at the medical records. Susie, I hope that helps. Comment below if you have any other questions, of course.

Let’s move on to the next question, which comes from Sylvia. Sylvia writes,

“Hello, Patrik. I desperately need your help. On December the 5th 2022, my 86-year-old father had surgery to remove his kidney due to cancer. The cancer was localized to the kidney. It had not spread, and they were able to get it all out. My father did well with the surgery and the doctor was planning on discharging him a few days later. However, two days after the surgery he developed a pneumonia. He was intubated for three weeks. He wasn’t able to be extubated and they performed a tracheostomy.

Now, almost six months later, he’s still hospitalized in the ICU, unable to get off the ventilator. Our family is under so much stress. We have suffered from both physical and psychological distress. We don’t know what to do to help our father. Recently has shown some minor improvements.

They placed a pigtail catheter in his lungs because they were constantly filling up with fluids. However, they have not removed any fluids from his left lung in the two weeks and very little from his right. However, although he makes urine, they have started dialysis three times a week because his creatinine is high.

We want our father taken off the ventilator. However, when they do the breathing trials and place him on CPAP (Continuous positive airway pressure), his respiration becomes too high, and they discontinue the trial. Either his respiration becomes too high, or he develops a bacteria and isn’t able to do the breathing trials.

This is the hardest thing our family has gone through. We are a very close family, and we are devastated to see our father and our mother, her beloved husband, lying in a hospital bed for nearly six months not knowing how to help him. It is so frustrating.

Our mother cries herself to sleep each night, she misses him so much. Prior to the surgery, my father was mobile, went on walks every day, and now he’s lying in a hospital bed. Please help us.

From Sylvia.”

Well, Sylvia, I wouldn’t say it’s an easy fix, but there is a way forward for you. I’ve been talking about Intensive Care at Home earlier where patients on ventilation and tracheostomy can go home after a few weeks or a few months’ intensive care and the inability to wean off the ventilator, and that includes dialysis. We can do all of that at home.

This is a reasonably easy fix, we just need to get together and work out the logistics and we need to work together to work out where the funding is coming from, but bear in mind they’re paying for an ICU bed for five to six thousand dollars per bed day whereas Intensive Care at Home is approximately half of the cost. So, therefore, it’s a win-win situation. We have taken many patients home in a similar situation. Of course, you got to adapt to having people coming into your home as well, but obviously it sounds like this is no longer sustainable for you. It’s no longer sustainable for your dad. Your dad is probably heavily depressed, and you don’t want that to continue, of course. You don’t want your mother crying yourself herself to sleep every night.

We know the stress that families go through when they have a loved one in intensive care, especially in this situation. It’s been six months. This is ridiculous. Intensive Care at Home is the answer to that. We can take you home, take your father home, help you. We set up the team for you, making sure your father has the right nursing staff, making sure the discharge planning is organized with the hospital, making sure there’s medical cover in case something needs to be addressed from a medical point of view. But just with our 24-hour nursing care at home, we can replicate that ICU bed at home.

We can make sure your father has community access, for example. There’s not one of our clients with Intensive Care at Home that doesn’t have community access. That’s the whole purpose, to get people out and about in intensive care and get community access.

So, CPAP at home, tracheostomy care at home, dialysis at home, it’s all doable. You need to look after your family here because it doesn’t sound to me like your mother is no longer coping. By your dad staying in hospital, it set off a downward spiral and that can only be broken by going home, so I urge you to reach out to us to Intensive Care at Home so we can help you get your father home as quickly as possible.

Now, if you’re watching this and you are an NDIS support coordinator and you want to know what our service does for patients and families, please reach out to us as well. We can help you, guide you through NDIS funding as well because obviously, all of our clients have NDIS nursing funding care. So please, we would love to talk to NDIS support coordinators as well. If you need a nursing assessment while someone is in intensive care for home care, please contact us as well.

Now, let’s move on to one more question before we wrap this up today. This is a question from Tara. Tara writes, “My father is in ICU and has been since 1st of April 2023. They put him on CRRT (Continuous Renal Replacement Therapy), which is a form of dialysis, and keep saying they have maxed all treatments. I keep an extremely close watch on his MyChart records and have had a lot of issues with things they’re putting in his charts. He was on two forms of life support a couple of weeks ago. Now, they say he’s on four forms of life support and are giving us guilt trip for wanting to keep him fully code. He has been in and out of hospital since January the 9th 2022. That started with an abscess in his tooth. We are very concerned, and I have tried to get a cardiologist on his care as his heart is now still not functioning properly. My dad is fighting hard to live, and the ICU is giving up on him. I have audio recordings of approximately 300 times the doctors come in the room to update us.”

Now, you’re saying he’s been on two forms of life support initially and then he’s been up to four forms of life support. You haven’t actually said why he’s in hospital, but it sounds there could be something wrong with his heart if you want to talk to a cardiologist. But let’s just quickly talk about the forms of life support.

The most used forms of life support in ICU are mechanical ventilation to help someone breathe. The next form of life support that’s used frequently is inotropes or vasopressors. Inotropes or vasopressors are used, sometimes vasodilators as well, to manage blood pressure that is compatible with life. A lot of patients in ICU have low blood pressure that is not compatible with life, and therefore, they’re put on an IV drip with inotropes or vasopressors such as noradrenaline, norepinephrine, epinephrine, phenylephrine, vasopressin, dobutamine, dopamine, isoprenaline sometimes. Those are forms of inotropes that are being used to maintain good blood pressure. The vasodilators for high blood pressure to get blood pressure down, generally speaking, that I use intravenously is GTN, SNP, sodium nitroprusside. Sometimes IV metoprolol can be used as well.

Now, you’re talking about sometimes now they’re telling you he’s on four forms of life support. Well, what are other forms of life support? Other forms of life support are CRRT or dialysis. Other forms of life support in ICU that are being used often is ECMO (Extracorporeal membrane oxygenation), LVAD (Left Ventricular Assist Device), and RVAD (Right Ventricular Assist Device). They can be other forms of life support as well. You haven’t mentioned anything there.

Generally speaking, the more life support there is needed, yes, one could argue the less chance there is for survival, but then again, if you don’t try and if you’re not offering that for patients, they, generally speaking, won’t survive so it’s good that they’re trying everything.

You’re also saying that his heart is not functioning properly. Like you said, is there a cardiologist involved? What does the cardiologist say? Has he had an angiogram, an angioplasty? Did he have a screen of his heart? Did he have an ultrasound of his heart? What’s his ejection fraction like? So many questions that still need to be answered here, Tara, to get your dad from A to B.

Don’t let the ICU guilt trip you. I’ve made a video about that, “What if the ICU team is guilt tripping you?” Don’t let them guilt trip you. You are in charge. You know what your dad wants and what’s best for him. Just hold them accountable and keep pushing for what you want. Don’t let anyone guilt trip you. I hope that helps. Again, Tara, I would also highly recommend you reach out to us so that we can help you with a medical record review. We’ve got a team of highly experienced intensive care nurses reviewing medical records in the background and they can tell you very, very quickly what’s going on. They can give you very, very quickly a second opinion.

Now, let’s wrap this up. If you still have any questions, please type them in the chat pad. If not, I am going to wrap this up.

Thank you so much for coming onto the show.

I would really appreciate it if you give the video a like and if you subscribe to my YouTube channel.

If you have a loved one in intensive care, go to intensivecarehotline.com. Call us on one of the numbers on the top of our website or simply send us an email to [email protected] with your questions.

Also, if you have a loved one in intensive care and you want to go home because your loved one has a tracheostomy, is ventilated, needs seizure management, and needs BIPAP, CPAP for whatever reason, needs home TPN, needs home IV fluids, please go into intensivecareathome.com. Contact us on one of the numbers on the top of our website or send us an email to [email protected].

Also, have a look at our membership for families in intensive care at intensivecaresupport.org. There you have access to me and my team, 24 hours a day, in a membership area and via email, and we answer all questions in intensive care and Intensive Care at Home related.

If you need a medical record review, please reach out as well. We review medical records in real time, and we give you a second opinion in real time. If you need a nursing assessment for the NDIS or for any other funding body, please contact us as well. That includes private health insurance. We provide medical or nursing assessments as well.

Also, I obviously offer one-to-one consulting and advocacy with families in intensive care and with intensive care teams as well. I offer that over the phone, Zoom, WhatsApp, Skype, whichever medium works for you. If you are needing a medical record review because you have unanswered questions, you need closure, or you’re suspecting medical negligence, please contact us as well. We can help you with that as well.

If you are a critical care nurse looking for work, especially in Australia, please contact us as well. The same if you are an intensive care consultant and you want to work with us. Please reach out to us at intensivecareathome.com.

Now, thanks for watching.

Again, subscribe to my YouTube channel, give the video a like, 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 from this video. I would really appreciate that.

Thank you so much for watching.

This is Patrik Hutzel from Intensive Care at Home and Intensive Care Hotline. I’ll 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.