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,
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.
My Husband is in ICU with Pneumonia, They Asked Me to Donate His Organs, Can He Go Home Instead? Live!
Hello and welcome to another Intensive Care at Home livestream here on YouTube, also broadcasting to LinkedIn, Facebook, and Twitter on our accounts. Thank you so much for joining.
And today’s topic will be another question from one of our readers. And the question today is, “My husband is in intensive care with pneumonia. They asked me to donate his organs. Can he go home instead?” These are obviously questions we are getting from readers all the time. So everything that I’m talking about here, either in my YouTube live streams or in my quick tip videos or anything that we’re publishing, it’s all real world stuff. It’s questions, case studies we get from readers or clients. Everything that we’re talking about here is real world stuff and it’s what clients are telling us.
So before I go into today’s topic, just a couple of housekeeping issues. If you have any questions, please type them into the chat pad. Any questions or comments, please type them into the chat pad. I will answer them. I will also go through some other questions that came in during the week a bit later. If we have time, I’ll give the option for you to call in and you can dial in live on the show and you can answer your question on a call, depends how much time we’ve got. We’ll probably be going for up to an hour.
Before we go into today’s topic, I also want to welcome our viewers that watch this video on replay that didn’t make it to the livestream here. So welcome to our replay viewers as well. I would also welcome if you share this video with your friends and families, if you subscribe to my YouTube channel for regular updates for families in intensive care and Intensive Care at Home. Click the like button, click the notification bell and leave plenty of comments as well.
Now, before we go into today’s topic, what makes me qualified to talk about today’s topic in case you’re wondering. Again, my name is Patrik Hutzel. I am a critical care nurse by background. I have worked in critical care for over 20 years in three different countries. I have also worked as a nurse unit manager in intensive care for over five years. I am the founder and managing director of Intensive Care at Home where we are providing intensive care nursing at home for long-term intensive care patients, predominantly for clients with long-term ventilation tracheostomy, but we also provide tracheostomy care at home for non-ventilated clients.
We are providing home care for BIPAP (bilevel positive airway pressure), CPAP (continuous positive airway pressure) ventilation ventilated clients. We are providing home TPN (Total Parenteral Nutrition), home infusions, home antibiotics. Quite a number of our clients are also having seizure management at home. In essence, we are replicating an intensive care beds in the community and we’re keeping intensive care beds empty that can be used for more critically unwell patients. We have been operating since 2012 in Australia. We are currently serving all major capital cities including regional and rural areas. We are NDIS (National Disability Insurance Scheme) accredited, TAC (Transport Accident Commission) in Victoria, iCare in New South Wales, DVA (Department of Veteran Affairs) approved service provider, as well as we have worked and are working with some hospitals directly.
We are the only service in Australia that has third party accreditation for Intensive Care at Home. So we have really built unique intellectual property around our service. We are employing hundreds of years of intensive care and critical care nursing experience in the community, which I believe is unmatched by any other service provider currently. We are also now branching out into the United States. We have a lot of inquiries from clients in the United States. So please contact us as well if you are interested in intensive care in the United States. I have more to say about how we exactly roll it out in the U.S. in the next few weeks. Not quite there yet, but we’re building up for it.
Also, if you are an NDIS support coordinator, or NDIS specialist support coordinator, this video could be very important for you as well because a lot of NDIS support coordinators or specialist support coordinators don’t even know that the NDIS is funding nursing care for predominantly ventilated adults and children, tracheostomy adults and children, non-invasive ventilation such as BiPAP and CPAP. We are working with a handful of NDIS support coordinators and NDIS specialist support coordinators who are amazing, who understand the NDIS. But if you are an NDIS support coordinator and you don’t know enough about nursing care with the NDIS, please contact us. I believe we can help you. And if you are an NDIS participant and you don’t have the right NDIS support coordinator, please contact us as well.
Okay. On top of the Intensive Care at Home, a lot of the videos that I’m making obviously are also inspired by families in intensive care that I’m talking to. I do have another organization, Intensive Care Hotline, where we consult and advocate for families in intensive care all around the world. And again, we have been doing this or I have been doing that for the last 10 years as well. So really, I’m talking to families in intensive care all around the world almost every day. Okay. That’s enough. Without further ado, let’s get into today’s topic.
Again, today’s topic is, “My husband is in ICU with pneumonia. They asked me to donate his organs, I want him home instead.” Okay, what a great question, and something that I’ve personally experienced on both ends. And what I mean on both ends is I will share some stories, some client stories today from Intensive Care at Home where this was the case, but I can also talk about my experience in intensive care.
So in the community with Intensive Care at Home, like I said, we are looking after predominantly long-term ventilated adults and children with tracheostomies. There’s probably not one client that has not been faced with the question in ICU, do they want to switch off life support and donate organs instead? And our clients in the community tell us war stories about that. And they vividly remember when this happened, when their loved ones first went into ICU. Some of our clients are also verbal. They can speak for themselves. And they vividly remember that they’ve been asked to donate their organs and have life support withdrawn.
Now, compare that or contrast that with the life that they’re having now. I mean, they’re living at home with community access, even though they have intensive care nursing needs, especially around ventilation, tracheostomy. Their parents often can relive the trauma that they went through when the hospitals asked them, “Oh, we think we should be withdrawing treatment here. By the way, do you want to donate organs?” And they really couldn’t believe the question that was asked, because for them, it wasn’t even an option to consider withdrawing life support, because again, ICUs think or told families or patients, “Well, if you survive, you won’t have any quality of life anyway. So why even bother?” That’s terrible.
Now again, look at the alternative. The alternative is, those clients are now living at home. Yes, they have intensive care nursing needs, they are on a ventilator, they have a tracheostomy, they have community access. They’re living a good life. They want to live. They’re not depressed. And ask them now and they have a good quality of life.
So to come back to our reader’s original question, ICU wants you to donate organs. Well, why do they want to donate the organs? Why are they asking you that? Is there an agenda? What is the agenda? Right? Can the ICU where your husband is at, they probably can’t think outside of their little ICU bed. They have no idea what’s possible in the community with the right support. If you look at our case studies at intensivecareathome.com, when you go to our website, you can read with the case studies that many patients in intensive care with all sorts of critical illnesses have made it into the community and are living their best possible life with 24-hour intensive care nurses at home or 24-hour critical care nurses at home.
There’s nothing stopping you from taking your husband home, that is assuming he does need a tracheostomy, that is assuming he can’t be weaned off the ventilator. It sounds to me like you have to take a few steps before you’re even looking at going home. But in order for you to be asked should you want to donate or would you want to donate organs, I believe that’s a very loaded question and it’s also a very confrontational question. Unfortunately, when patients are critically ill in intensive care, you got to stare at what’s there head on. And that’s very uncomfortable. Don’t get me wrong. I mean I’ve been living in this world for the last 25 years.
But the reality is, you got to face what’s happening head on. You can’t be shying away from it because the minute you take your finger off the pulse, the minute you don’t understand what’s happening, you’ll be fighting an uphill battle. And again, this is probably extremely difficult for you or for any family to look at what’s happening and to be confronted with the realities here. But by the same token, you should also not be thinking about home care yet. You might want to think about, “Okay, well, what needs to happen to get my husband off the ventilator? What needs to happen to get him out of intensive care alive? What needs to happen to avoid a tracheostomy?
You got to ask all of those questions. At the moment, they’re throwing the doom and gloom scenario at you in terms of let’s donate organs and let’s just stop life support. Whereas you need to come from a different angle and you need to get a second opinion very, very quickly to find out, okay, again, what needs to happen to get your husband off the ventilator, clear the pneumonia, avoid the tracheostomy, avoid organ donation, obviously avoid end of life.
And if all of that fails, then you can look at tracheostomy, potentially PEG (Percutaneous Endoscopic Gastrostomy) tube, and then going home. As I said in the beginning, that’s all possible. That is not the issue. Going home will not be the issue, assuming your husband can turn the corner and can get off the ventilator. But even if he can’t and he is long-term ventilated with a tracheostomy, then you should be looking at Intensive Care at Home.
So I hope that sheds light on this situation. And for anyone watching this that is working in intensive care or in critical care, these are the questions that are going through a family’s head. I have found after working in intensive care and also after starting to talk to people in my businesses outside of intensive care, all of a sudden, I realize they’re asking very different questions compared to what they’re asking in ICU. Because in ICU, they’re feeling intimidated. They’re feeling, “Oh, if I’m asking the wrong question here, will I get penalized? Will I get knock backs from the ICU? Will they not look after my family member as well as they could do because I’m being perceived as difficult?”
Well, the reality is, you can’t be operating on fear. You have to operate on courage and courage alone, and you cannot be shy on asking the hard questions because as you can see, with this question, the ICU team is not shy of asking their hard questions. I mean, how more confrontational can they be? You have your husband in ICU, it’s all brand new, it’s all fresh, and they’re asking you, “Do you want to donate organs?” That’s extremely confrontational. So you are coming from the right angle here. You got to ask, “What’s possible on the other end? I’m not ready to talk about end of life. I’m ready about prolonging life. I’m ready about looking outside of the box solutions, i.e., going home,” even though I don’t think it’s an outside of the box solution. It’s a perfect solution. It’s a solution that’s been there for a long time.
So you are on the right track here in asking all of those difficult questions. And again, there’s not one of our clients at home who has not been confronted with this situation before. And again, they all want to live, they’re all very happy in their own home rather than having died in intensive care potentially with some organ donation.
The reality on the other side is, while we are talking about organ donation, the demand for donating organs is probably going through the roof. I mean, it’s an unfortunate reality. But it may not be the right solution for your husband in this situation and I don’t think it is.
So I hope that answers your question. And if you are then in this situation that you think your husband needs to go home, please contact us at intensivecareathome.com and we can guide you through the process step-by-step, including how to obtain funding, especially if you are in Australia. Currently, as I said, most of our clients are NDIS-funded. But especially for clients that are above the age of 65, they’re falling through the cracks. Now some of our clients that are above the age of 65 are DVA-funded, the Department of Veteran Affairs. So that’s one option, but that’s assuming that your family member, your husband is a DVA participant. I wouldn’t know.
For any other client that’s above the age of 65, what we tend to do is we tend to make submissions to the Department of Health to highlight those cases because it’s very much a niche market that we operate in. And we are talking about a recently low number of clients, but it’s very labor-intensive. And if we don’t help these clients to go home, they often wither away in a hospital unfortunately or in an ICU. And then eventually, families get told, “Well, we can’t go anywhere here. So it’s ‘in the best interest of their loved one to die.” And by going home with Intensive Care at Home, you can avoid that.
But even if your loved one is at end of life, we are also providing palliative care at home. We have taken patients home from intensive care for end of life care even though they might be ventilated with a tracheostomy. Doesn’t make a difference to us. Or BiPAP, CPAP. We have provided palliative care for intensive care patients at home with end stage lung cancer on BiPAP for example. So it’s all possible. But also with tracheostomy, ventilation at home, end of life care, we’ve done that too. So nothing really stopping us from looking after any patient at home with the support structure and the intellectual property and the accreditation we have in-house.
Okay. So let’s move on to some questions that came in during the week. Again, if you have any questions in relation to today’s topic or any other questions, please type them into the chat pad. In the meantime, I will go through my emails and I will just bring up questions from this week. Just give me a second. Just got to get to my emails. There we go.
Okay. Here is a question from Taylor. Taylor says, “My mother has been in ICU for five weeks now. She developed COVID, and after symptoms worsened, she was rushed through the hospital where she was diagnosed with COVID pneumonia. She has since had two other lung infections as well as the pneumonia for a second time. She has been on a ventilator, sedatives and paralytics the entire time and has been on dialysis for at least four weeks. The ICU scheduled a family meeting where they seem very confident that she will not recover and they’re trying to convince us to pull the plug.”
“After doing our own research and watching some of your videos, we strongly believe they’re not doing everything they can and we are worried about medical negligence. I wish I had found you sooner because we’ve already lost one family member due to their negligence. We would greatly appreciate your help and I’m looking forward to hearing back from you. Thank you so much. I’m also very interested in signing up for your membership and I think you might be able to help me and my family. I was also curious to know if there’s a separate fee for reviewing medical records and what that fee might be.”
Okay. Thank you so much Taylor for sending through that question. Well, the first thing that stands out to me here is this. So, your mom has been in ICU for five weeks now, in an induced coma with COVID pneumonia and they’re saying she’s not going to survive this. Well, the reality is that after five weeks, she is still surviving. So you have to probably start questioning their judgement and you probably have to start questioning their motives by saying that, because the reality is that after five weeks, she’s still here. If their predictions were right, why is she still here? So that’s the first thing you’ve got to ask yourself here.
If she’s been on a ventilator, sedatives and paralytics the entire time and she has been on dialysis for at least four weeks, so it sounds to me like she does not have a tracheostomy yet because the minute she has a tracheostomy, they should be able to stop sedatives and paralytics as well. Assuming her lungs are clear or clearing, because sometimes, patients need to go on paralytics and sedatives if a patient can’t be ventilated. So it’s not quite clear to me what’s happening here, but it appears to me from your email that your mother doesn’t have a tracheostomy yet.
Now, you are saying the ICU scheduled a family meeting where they seem very confident that she will not recover and they’re trying to convince us to pull the plug. Now, okay. If they scheduled a meeting, why would you go to the meeting without an agenda in writing to begin with? That is always my advice, that if ICU invites you into a family meeting, to get an agenda in writing to begin with. Now, think about this in real life terms. Any meeting, any business meeting has, generally speaking, an agenda. So why would there not be an agenda for a meeting that is potentially about life or death?
Now, from my experience, 99.9% of the time when ICUs want the family meeting, it’s in relation to giving you bad news. And they wanted in a meeting to make it formal so they can prepare because they know what to say, they know how to say it, they know when to say it, they know what not to say, and they know how to manipulate you. So never ever go into a family meeting without a written agenda, and never ever go into a family meeting without my representation. Because if you go into a family meeting unprepared and if you go into a family meeting with intensive care teams, without speaking the medical language, without knowing intensive care inside out like I do, you’ll be fighting an uphill battle.
And it’s easy for them to position to you that the only option is end of life. So I’ll give you a quick example to illustrate that to you. Just this week, we are working with a client currently who has their 83-year-old grandfather in ICU. He had a colectomy, like a bowel resection. And he has a pneumonia. He’s also got underlying cancer. But basically, he ended up in ICU intubated, and his day must be day 13 today. And the ICU has given them the doom and gloom talk from day one he’s going to die, let’s just stop everything, it’s not in the “best interest of your grandfather” to live.
Well, their grandfather has made it very clear to the family that he wants everything done because he wants to live. Okay? So it turns out when the family came to us and sent over some medical records, we found that basically the client had not received any nutrition or very minimal nutrition for the last 11 or 12 days. This is obviously after massive surgery with big wounds, big surgical wounds. Well, wound healing can’t take place without nutrition. Fighting a critical illness will not take place without nutrition. So in the actual medical report, it says something along the lines of, “Well, the client is at very high risk of dying because he’s malnourished on top of his critical illness.”
Well, of course he’s malnourished because you haven’t fed him for the last 13 days. It turns out that part of the medical report, there was no talk about solutions. There was only talk about that the only solution is end of life. Well, then we went back to the family and we said, “Well, what about TPN as an option?” Well, TPN stands for total parenteral nutrition, also known as intravenous nutrition. And lo and behold, we got on a call with the ICU doctor and we said, “Well, why was TPN not suggested to the family as an option?” And really the doctor had no comeback and said straight away, “Well, if you want TPN, we’ll get TPN started. You are in control.” But that was only after I had intervened and basically told them, “Well, you have to educate your families on some options. The only option you’ve given them is end of life.”
That’s how quick a situation can be turned around if you know what to look for, if you know what questions to ask, if you know about patient and family rights in intensive care. It was a very one-sided story. Okay, that’s just one example. And there are many other examples. If you look on our testimony page or if you look at one of the podcasts that I’ve done recently with one of our clients where I believe we saved the life through our intervention by advocating.
So coming back to Taylor’s email where she says, “After doing our own research and watching some of your videos, we strongly believe they’re not doing everything they can and are worried about negligence. I wish I had found you sooner because we’ve already lost one family member due to their negligence. We would greatly appreciate your help and input.”
So again, similar to the case study that I’ve given you now. If we could look at the medical records, if we could talk to doctors and nurses directly, we’re probably finding out very quickly that they’re only telling you half of the story and that they’re not telling you the truth, and they haven’t given you all treatment options. Again, you haven’t talked about a tracheostomy here, right? Why is your dad still sedated after four weeks? Your mom, not your dad. Why is your mom still sedated after four weeks? Why can’t you get a tracheostomy? Have they even told you about a tracheostomy?
Well, this is the other thing, one of the clients that we’re currently working with. Also had no idea what a tracheostomy is. I educated them on a tracheostomy that if their grandad is not waking up, that the tracheostomy could be done. Again, the client had no idea. Again, biggest challenge for families in intensive care, 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. Big, big challenge.
Okay. So then your other question, do we charge a separate fee to review medical records? It really depends a little bit. It depends on how long has your loved one been in intensive care for. It’s different timelines for if someone has been in ICU for two months versus two days. So it really depends on the volume. Sometimes, we can review it just as part of our membership that we are offering, but it really depends on the volume. So I hope that helps. Let’s move on to the next question.
The next question comes from Pagano. Pagano says, “I want to take my sister home, take care of her. She’s living on a ventilator with a tracheostomy and they declare her with a partial brain injury.” Okay. Well, that in my mind is very clear cut, assuming she can’t come off a ventilator. Then home care is absolutely the right thing to do because many of our clients at home have a partial brain injury. It brings us back to our original question, going home even though ICU wanted to switch off everything and donate organs. Many of our clients at home have a partial brain injury. And again, they live a very good quality of life and they want to live.
So you are on the right track here, Pagano, with your question and with taking your sister home once again. And that’s bread and butter for us at Intensive Care at Home, taking someone home on a ventilator with a tracheostomy from ICU. Sounds to me like your sister has been there for a while. Again, please contact us immediately here at intensivecareathome.com and we can help you with taking the next steps. We can help you with the funding side of things. We can help you with organizing equipment. We can help you with care coordination. We can help you with all the facets that are required when it comes to home care for Intensive Care at Home.
So that’s a quick and easy question. You sister with our service will also have community access. Again, all of our clients have community access irrespective of their injury or illness. Compare that to what’s happening in intensive care. No community access, no natural daylight, no nothing. Going home, you’ll be surrounded by your family, you have community access, you can visit places. It is a no-brainer and it is what people need and want. And once again, it’s also a win for hospitals and for ICU units in particular because we free up an ICU bed, we free up one of the most sold after beds in hospital, and we are freeing up staff and equipment. It’s a win-win for everyone. We’re cutting the cost of an intensive care bed by 50%. It’s a win-win altogether.
Okay. Let’s move on to the next question from Sandy. And Sandy says, “My mom has been in hospital for four weeks on high-flow nasal cannula after pneumonia and has pulmonary fibrosis. The hospital wants to send her to a long-term acute care facility specializing in respiratory rehab. Will that be better than hospital? Should I fight to keep her in hospital? Hospital is close to my house while the LTAC is not and I have heard mixed reviews. Please help.” And Sandy is in California in the United States.
So this is another, not tricky one, but it’s actually something that I have not heard, that all of a sudden, hospitals are also trying to send patients on nasal cannulas or a high-flow nasal cannula to LTAC. That’s new to me. I haven’t heard of that.
Now, just because I haven’t heard of it doesn’t mean it’s not happening. But most clients that we are dealing with that are on the verge of going to LTAC in the U.S. from ICU are patients with a tracheostomy and ventilation, generally speaking. I would think that, what are they going to do in LTAC with high-flow nasal cannula and with pulmonary fibrosis? Now depending on the age of your mother and depending on the severity of the pulmonary fibrosis, I would think that she might be a candidate for a lung transplant. Now, lung transplant cutoffs… Generally, age cutoffs, I should say, generally speaking, around 65.
So you got to work out what are they going to do for her in LTAC. Wouldn’t she be better off if she can’t come off the high-flow nasal cannula and she may not because of the pulmonary fibrosis? Pulmonary fibrosis means there’s scar tissue in the lungs, lung compliance is reduced, the lungs are very stiff. That’s why, often the only option forward there is a lung transplant. Okay. So what are the goals of care here for your mom? Is it to maintain quality of life? Is it already an end of life situation? Does your mother want to spend more time in hospitals? Does she want to go to LTAC? Given that LTAC is far away from where you live, you can almost exclude that because you want to be close to your mom while she’s going through this, I would imagine.
So a lot of it depends what your mom’s goals of care are, what are the goals for you and your family. If she can have a lung transplant, she probably needs to be worked up for that. I don’t believe that LTACs are preparing patients for a lung transplant. I would imagine that keeping her in hospital and preparing her for a lung transplant with the goal of getting her on a lung transplant list would be the goal. So that’s why you probably should fight to keep her in hospital and not let her go to LTAC. But you can also start looking again for services like Intensive Care at Home where she can go home on a high-flow nasal cannula. Because even that probably needs an ICU nurse 24 hours a day.
You got to work out what she exactly needs going forward while you are hopefully preparing to get her on a lung transplant list. So, we have had patients at home or clients at home with Intensive Care at Home that have been alternating between high-flow nasal cannulas and BiPAP. So that could be another option for your mom. Again, you haven’t shared what else is going on. Does she need to go home while getting on a lung transplant list? High-flow nasal cannula, maybe a little bit of BiPAP, I do believe that our service, Intensive Care at Home, might be perfect for that.
Going to LTAC will be a disaster. Many patients in LTAC bounce back to ICU pretty quickly. I’ve made countless of videos about that simply because of some real life experiences when we work with clients one-on-one. So I hope that explains, Sandy, what you might want to do next with your mom.
Coming to the next question from Kitty. Kitty says, “Hi, Patrik. My husband just passed away on 7th of April. I had access to his medical records through an app using his username and password when he was in ICU. He was on mechanical ventilation for almost four weeks. They shut down access to his records the same day he passed away. Can I request a copy of his medical records still? My husband signed a medical power of attorney for me.”
Well absolutely. If you are the medical power of attorney, then absolutely you should get access to the medical records, no question asked. You just need to verify to the hospital that you are the power of attorney. So that should be an easy fix. Now, if you want a medical record review and find out what’s exactly happened, has there been medical negligence, please contact us. We can help you reviewing the medical records, of course. We have a legal nurse consultant service. So please contact us for that, Kitty.
Then, let’s move on to the next question that’s come in from Ryan. “Hi, Patrik. I’m going through an incredibly hard time with my dad in ICU. He’s a dialysis patient who has been in ICU since Friday with an infection for septic shock. I’m trying to get information.” Right. Okay, Ryan. So in a situation like that, what you may want to do is map out what’s going to happen. Let’s just focus on the septic shock side of things. Let’s not focus on the dialysis for now. So with a septic shock in ICU, you can probably expect the following. Your dad with a pneumonia… You’re not talking about a pneumonia, you’re talking about an infection, but you’re not specifying.
So with an infection with the septic shock, your dad would probably end up on multiple antibiotics depending on what the source for infection is. He’ll probably end up being hemodynamically compromised. He would be in an induced coma by now. He would be on mechanical ventilation. With him being hemodynamically compromised i.e., low blood pressure, maybe hemoglobin drop, heart rate will probably go up, electrolytes might start shifting, especially if he’s a dialysis patient. He would be hemodynamically very unstable, and he would need multiple forms of life support i.e., vasopressors or inotropes to maintain a blood pressure that’s compatible with life. That’s one thing that’ll happen.
He might end up with some steroid therapy. He will now even more so end up on dialysis. Many patients with the septic shock in ICU, their kidneys fail and they end up on dialysis. Your dad has already been a dialysis patient to begin with, so he needs to get on dialysis as quickly as possible. Now, the next few days will be critical for your dad to see where his journey will be going. Now Ryan, again, keep in mind here, most importantly for you to understand is, most patients in intensive care survive. So the research shows that approximately 90% of patients in intensive care survive. So why should your dad be the one out of 10 not surviving?
Now, when patients in intensive care survive, that could look very different ways. We are not talking about quality of life here, we are talking about survival and someone leaving intensive care alive. You have to use judgement and you have to do your research whether your dad want to go through all the flat treatment, whether he’s prepared to go through some suffering to get to the other side. Maybe this is something you have discussed with your father before he went into ICU. I don’t know. Maybe he’s got an advanced care directive where he’s got documented what he wants in a situation like this. But you should not give up here. It’s very early days.
There are side effects from ICU treatment, of course. Sometimes, patients can get out of ICU with post-traumatic stress, right? They might be confused, they might have psychological impairment, mental health impairments. These are all realities of long-term ICU treatment. Right? You got to be aware of that. You got to do your research. And you have to find out very quickly whether the ICU is doing all the right things for your dad. Right? So these are things that are really important for you in the next few days to find out are they doing everything within their power to get your dad out of the septic shock scenario and letting him live.
Similar to some of the case studies that I’ve given today already, you need to know what questions to ask. You don’t want to be in a scenario with our other client where they had no idea that there are treatment options. I’ve mentioned some, but depending on the severity of the infection, depending on where the infection is, there could be other treatment options. So the more information, the better. If your dad, for example, stays in ICU for prolonged periods, is a tracheostomy needed? Will the ICU push for a DNR (Do Not Resuscitate)? I’m just trying to lay out what might come and trying to prepare you here. Because you got to be prepared for the negativity. You probably have to be prepared for the doom and gloom.
They may have already been negative and they may have already given you the doom and gloom speech. I don’t know. But be prepared for that. And push back if you want your dad to live. So I hope that helps. Let’s move on to the next question from Terry. Terry says, “I had COVID 18 months ago. I was at 40% of oxygen. I don’t know what my oxygen saturation was, but it was that low for almost a day, I believe. I was medi-lifted to a better hospital. And at 2:00 AM, I was put on a ventilator. Luckily, I was unconscious, don’t remember anything most of the next 14 days when they started weaning me off the ventilator.”
“The first memories I had were like nightmares, continuing till finally I could figure out reality from the nightmares. I had to move in with my son because I couldn’t take care of myself. After a year, I’m home, but not yet the me I remember. I have to force myself to shower, and then only once a week. Thank God I have a 17-year-old son that helps me. But he will only be there until he graduates high school. The question is, will I get any better and closer to normal?”
Wow. I’m very sorry, Terry, to hear about your situation. It’s hard for me to say whether you will get better and back to normal. Really hard to say for me. What I will say is this. Go to another website. Go to icusteps.org. That’s, again, icusteps.org. It’s a website for ex ICU patients, and I believe you will get the help there that you need. Please bear in mind, we are specialized here on long-term intensive care patients. We are specialized here on the acute phase in intensive care. We are not specialized here, unfortunately, on what happens with patients that survive ICU. They go home, they walk home, they’re back to some level of functionality. It’s outside of my area of expertise. So that’s why I’m suggesting to you to go to icusteps.org and have a look at their website.
Okay. Next question from Brenda. “Hi, Patrik. I hope that you will answer my question as my family and I are desperate. My dad, almost 75, went into cardiac arrest 11 days ago. He was sedated and placed on a ventilator. The drug for sedation used was midazolam. He has stage four kidney disease, atrial fibrillation and bradycardia. And last year in August, he had a pacemaker. He had a bladder infection that we thought was gone. We saw him two days ago. He had opened his eyes, not responsive. He was just staring. We need real insights.”
Right. Okay. So Brenda, 11 days ago after cardiac arrest, the first question that I have is, did they tell you that there has been some brain damage? Have they done a CT scan of the brain? Have they done an MRI scan of the brain? Have they done cooling therapy after the cardiac arrest? So those are the first questions that I would seek answers for. And also, if with the cardiac arrest he has some brain damage, does he have potentially any seizures? Is he at risk of seizures? Right? Is he on midazolam to minimize the risk of seizures or potentially even manage seizures? Is he on anti-epileptic medications such as Keppra, phenytoin, Vimpat, sodium valproate and the likes because they also have a sedative effect.
So if he’s not waking up, is it a combination of him having potentially some form of brain damage and being on too many sedatives, including anti-epileptic drugs? Is that the reason why he’s not waking up? Is the reason he’s not waking up simply a result of him being critically ill and just simply not ready for it? Because when someone is critically ill, patients can be in a natural coma. They’re literally too crook to wake up.
Now, what’s happening with the AFib and the kidney disease? Does he need dialysis? What treatment are they giving for AFib? Did the AFib lead to the cardiac arrest? Is he still in AFib, in atrial fibrillation? Does he need some amiodarone? Does he need some, probably not digoxin because you’re saying he’s got bradycardia, but does he need some electrolyte replacements such as potassium or magnesium?
He’s got a pacemaker. Is the pacemaker working? Does it kick in at the right times? So it’s probably very early days here, Brenda, to come to conclusions. Your grandfather probably needs a lot more time than the 11 days he’s been having. Have they started him on dialysis as part on him being having kidney disease? Because part of him not waking up might simply be that his kidneys are not working and he’s not excreting sedatives and opiates and all the likes. Right? The other question that I have is, if it’s been 11 days, does he need a tracheostomy? Has a tracheostomy been discussed with you as a treatment option? If they haven’t discussed tracheostomy as a treatment option, well, I do believe that might be next because once he has a tracheostomy, then he should be able to stop to use sedation. Once they can stop sedation and opiates, well, he has a much higher chance to wake up. Okay?
So those are the questions that you want to ask in a situation like that. Maybe a tracheostomy hasn’t even been discussed with you as an option. Again, someone who’s on a ventilator with a breathing tube needs to be in an induced coma most of the time because having the breathing tube is so uncomfortable. It’s so uncomfortable that patients need to be induced into a coma. And just by being induced into a coma for many days will delay the process or can delay the process of waking up. Okay? So question to me is, why is he still on midazolam? Does he still need that? Once again, if he can’t come off the ventilator and he needs a tracheostomy, then the midazolam should be stopped.
So those are some insights there. So I hope that helps, Brenda. And sometimes, if your dad does have a brain injury from the cardiac arrest, let’s just say he can be weaned off the ventilator, he may still need a tracheostomy because part of a brain injury sometimes means there is no gag reflex, there is no swallowing, there is no clearance of airway. He can’t cough. Then he might need a tracheostomy. I do believe your biggest question at the moment is, if he’s still on a ventilator after 11 days and he can’t come off it, does he need to have a tracheostomy?
Okay. I hope that helps. I do believe I’m going to wrap this up in a second. So there will be another YouTube live next week, 10:30 AM Sunday on Sydney Melbourne Time, which is 8:30 PM on a Saturday night Eastern Standard Time. It’s 7:30 PM Central Time on a Saturday night. 6:30 Mountain Time, PM, in the US. And 5:30 PM Pacific Time on a Saturday. So look out same time next week. And I’m looking forward to see you then. Now, also have a look at my quick tip videos. They’re coming out almost daily. And once again, I appreciate if you can give the video a like, if you subscribe to my YouTube channel for regular updates for families in intensive care. Share the video with your friends and families. Share it far and wide. Click the notification bell and leave your comments.
Now, if you have a loved one in intensive care and you want to go home, go to intensivecareathome.com and contact us on one of the numbers on the top of our website, or simply send us an email to [email protected]. Again, currently, we are operating with Intensive Care at Home all around Australia, in all major capital cities, including regional and remote areas. We are NDIS (National Disability Insurance Scheme), TAC (Transport Accident Commission), iCare, NIISQ (National Injury Insurance Scheme, Queensland), DVA (Department of Veteran Affairs) provider in Australia. If you are in the U.S. or in the UK, please contact us as well so we can point you in the right direction with Intensive Care at Home. Again, if you’re an NDIS support coordinator or you are in need of an NDIS support coordinator, please contact us as well. We can help you with funding for registered nurses with the NDIS for our clients.
Now, if you have a loved one in intensive care and you need consulting and advocacy or medical record reviews, please contact us at intensivecarehotline.com. Please call us on one of the numbers on the top of our website or simply send us an email to [email protected].
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Last but not least, if you need an NDIS nursing assessment, whether you need it as a participant or as an NDIS support coordinator, please contact us as well. If you need a medical record review for your loved one in intensive care in real time, please contact us as well. We review medical records in real time for second opinions, and we also review them after intensive care if you have unanswered questions, if you need closure, or if you’re simply suspecting medical negligence, we have a legal nurse consultant on our team.
Thanks again for watching.
Share the video with your friends and family. Subscribe to my YouTube channel for regular updates for families in intensive care and Intensive Care at Home. Click the like button, click the notification bell and leave your comments below. If you want me to focus on any specific topic, please make a comment and I will make a video or a YouTube live stream about it.
Thanks for watching.
This is Patrik Hutzel from Intensive Care at Home and Intensive Care Hotline, 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.
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.
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.