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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,
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.
Taking My Sister Home to Take Care of Her. She’s Living on Vent & They Declare Partial Brain Injury
Hello and welcome to another Intensive Care at Home and Intensive Care Hotline livestream.
Today’s topic is, “Taking my sister home to take care of her. She’s living on the ventilator, and they said that she’s got brain damage. I want to take her home instead, what should I do?” We will cover this topic in depth today. What should happen before someone can go home on a ventilator with a tracheostomy, assuming they can’t be weaned off the ventilator and they’ve got brain damage? We have a lot of experience there.
But before we get into today’s topic, let’s just do some housekeeping issues. Please type your questions into the chat pad. I can also get you into this call if you like. We can go on camera or just stay behind without the face, without camera, and you can ask a question here live, or you can call in life on the show, or you can simply type your questions into the chat pad.
Also, before we go into today’s topic, what makes me qualified to talk about the topics that I’m talking about here, which is Intensive Care at Home and intensive care related? I am an intensive care nurse by background. I have worked in intensive care for over 20 years in three different countries. I have worked as a nurse unit manager in intensive care for over 5 years. I have been running Intensive Care at Home services for over 10 years here in Australia. I’ve also worked with Intensive Care at Home in Germany. I was part of a pioneering service in Germany 20 years ago. I have experience with Intensive Care at Home, and I have been consulting and advocating for families in intensive care for the last 10 years as part of my intensivecarehotline.com service.
Without further ado, let’s dive into today’s topic. I also want to welcome our viewers live, and I also want to welcome the viewers that watch this in the replay or listen to it in the replay. If you have any questions, if you’re watching this in the replay, just type them into the chat pad. Maybe I can make another YouTube livestream about it, or I can just respond to your questions maybe in a quick tip video. There are various ways I can get back to you about your questions.
Anyway, let’s look at today’s topic, “Taking my sister home to take care of her, she’s living on the ventilator with a tracheostomy. They have declared her with a partial brain injury.” Let’s look at that in more detail.
Many patients in intensive care that have a brain injury, whether it be a stroke, whether it resulted from seizures, whether it’s a traumatic brain injury, whether it’s from a hemorrhagic stroke, from a subdural hematoma, from an aneurysm, whatever the case may be, what led to the brain injury and the subsequent long-term stay in intensive care and the subsequent mechanical ventilator dependency with tracheostomy, it’s hard to say whether your sister will improve or not.
What is clear in most cases is that patients do want to live, and families want their loved ones to live. Even if it is potentially moving towards an end-of-life situation, families don’t want that end-of-life situation happen in intensive care. Patients want to go home, families want to go home, even if it is for end-of-life, even if it is with the ventilator and a tracheostomy.
Now, what you haven’t shared in your question is there any chance of your sister being weaned off the ventilator? What steps have been taken? Some families come to us, they don’t even know that weaning might be an option because ICUs can be so negative and depending on where you are and which ICU you are at, they’re so negative, they’re not even trying.
This week, I was talking to an ICU, I was actually in the U.S. and they’re not even trying to mobilize patients because they’re saying, “Well, they won’t come off the ventilator.” From my experience, nobody’s coming off a ventilator if you’re not mobilizing patients. It’s as simple as that. You got to mobilize patients at all costs, and that’s not difficult. Is it labor-intensive? Absolutely, very labor-intensive, but from my experience, you can’t wean someone off a ventilator without strengthening their breathing muscles, without stimulating them, without encouraging them. If someone has a brain injury, it’s even more important to stimulate them at the right times and to talk to them and keep encouraging them.
Also, if you are new here and you’re wondering what are we exactly doing with Intensive Care at Home? In a nutshell, we are basically sending intensive care nurses into the home for predominantly long-term ventilated adults and children with tracheostomies. But that also includes services like non-invasive ventilation, i.e., someone needing BIPAP (Bilevel positive airway pressure)/ CPAP (Continuous positive airway pressure) ventilation, someone only having a tracheostomy and not being ventilated. Other services are home TPN, intravenous nutrition with a central line, with a PICC with a port, with a Hickman’s line.
Other services include seizure management, which might be an issue in your sister’s situation if she has a brain injury, does she have seizures? If she doesn’t have any seizures, is she medicated to prevent seizures? Is she on anti-epileptic drugs? Those are all questions that need to be considered.
Now, coming back to Intensive Care at Home, we are currently operating all around Australia. We’re operating in all major capital cities, including regional and remote areas. Once again, we are sending intensive care nurses and pediatric intensive care nurses into the home for predominantly long-term ventilated adults and children with tracheostomy. We do so because it’s evidence based. What that means is, it’s evidence based that patients can go home from intensive care, long-term ventilated or long-term intensive care patients can go home if there are intensive care nurses with a minimum of two years ICU experience in the home, 24 hours a day. That’s exactly what we do.
Now, our clients are funded through the NDIS (National Disability Insurance Scheme), TAC (Transport Accident Commission) in Victoria, the DVA (Department of Veteran Affairs), as well as iCare New South Wales, or the NIISQ (National Injury Insurance Scheme Queensland). But sometimes we get funding through hospitals directly as well and through the Department of Health, one way or another, you should contact us.
Now, if you are in the U.S. and you’re watching this, we are now trying to partner with providers in the U.S. and we will probably very soon make an announcement that we open up our first branch in the U.S. but it’s not quite there yet, but we’re working towards it and I will give more information once we are exactly clear on our next steps.
If you’re in the U.K. watching this, please contact us as well. We have helped families in the U.K. to go home as well by helping them to take the next steps by helping them to source providers and funding, so please contact us one way or another.
If you are in Australia, we’re also providing NDIS nursing assessments, we offer NDIS support coordination, even more important NDIS support coordination as well as case management. We are also providing medical record reviews for anyone in intensive care or when they’re at the verge of going home.
Coming back to our question today, “Taking my sister home. She’s living on a ventilator with the tracheostomy. They’ve declared her with a partial brain injury. What should I do?” Again, if she can’t come off the ventilator, make sure that’s signed of on and then she can go home with the right level of support, which would be 24-hour intensive care nursing at home. She needs some medical governance that could come from the hospital, could come from one of the doctors that we are working with, could simply come from a GP or from a family doctor. Could simply come even from an or a spiritual physician. Doesn’t really matter who it is as long as they have an appreciation of ventilation, tracheostomy at home, can work with an accredited nursing service, which is what we are.
We’re an accredited nursing service for Intensive Care at Home. We have the intellectual property, we have the staff. As a matter of fact, we employ hundreds of years of intensive care and pediatric intensive care nursing experience in the home. I believe that is unmatched by any other service provider in the community. I argue we are looking after the highest acuity clients in the community that there are. I don’t think any other service provider has the ability to look after such high acuity clients in the community.
Now, what else needs to happen if your sister goes home? We also would need to establish can she at least have some time off the ventilator? Can she have two hours off the ventilator during the day when she’s hopefully sitting out of bed? Is that an option? If she can’t be off the ventilator at all, she probably also needs a sleep study before she’s going home, so that ventilator settings can be optimized, because the last thing you want at home, for example, is to work out what ventilator settings are best that should happen while patients are in the hospital while they can have a sleep study.
Some of our clients, they have one ventilator mode that is the result of them having a sleep study, them being monitored for the time they’re in the ICU and working out what’s best for them. Some of our clients on top of that have a cough assist machine to help them cough if they can’t cough, and that’s being used like two, three times a day. It prevents atelectasis, it prevents pneumonia, it prevents chest infection. Cough assist machine delivers a high PEEP up to 25, 30 centimeters of water and then a negative PEEP to help make them cough.
Other avenues if a cough assist can’t be used or can’t be tolerated are to have two ventilation settings, for example. One of our clients has two ventilator settings, a normal SIMV mode with a rate of 18, with a set volume of 540 mls volume, for example. Then, they also have another ventilation mode where they get a rate of six breaths per minute with a much higher volume, maybe 1,800 mls of volume that they can have for a period of time to expand the lungs.
It’s really important that ventilation can be optimized before someone is going home. That equipment needs to be optimized before someone can go home. It’s also very important that you have the staff of course, but I’ll come to that in a minute. It is also important that, again, equipment needs are met, that your house is ready for home care. I’m not suggesting a house always needs to be remodeled, and sometimes it might need to be, in some cases it might need to be remodeled. In most cases doesn’t.
We can be very creative in maybe making things work. Assuming your sister is immobile, she will probably at least need a portable hoist or lifting machine. Ideally a ceiling hoist. She will need a wheelchair. She will need a shower commode, toilet commode. She will need a suction machine. She will need at least two ventilators. She needs a monitor to monitor heart rate, oxygen saturation. She will need emergency equipment, spare tracheostomies, Ambubag or resuscitation bag, tracheostomy dilators are needed. Spare tracheostomies, of course. A face mask in case someone can’t put a tracheostomy back in. Then, a DuoDerm or a Comfeel to seal a tracheostomy in case a tracheostomy can’t be put back in, so someone can have resuscitation bag with a mask so that airway can be maintained. Those are things that need to happen at home.
When it comes to the costs at home and who will cover it, in essence, our service cuts the cost of an intensive care bed by roughly 50%. We are now talking $5,000 to $6,000 per bed day in intensive care, and we are cutting that cost by approximately 50%. So, whether it’s the NDIS here in Australia, whether it’s the TAC, whether it’s iCare, whether it’s the DVA, we have a proven business model for them to cut the cost in intensive care.
Also, I would hope that your sister needs some neurology input. Her medications need to be optimized before she’s going home.
Other things that should be happening is your sister will need a physiotherapy at home or physiotherapist. Your sister will need an OT, an occupational therapist at home. She probably will need a dietician, I assume your sister has a PEG (Percutaneous Endoscopic Gastrostomy) tube or a nasogastric tube. Dietician, occupational therapist, physiotherapist, that all need to be part of the care team. I talked about medical governance such as a GP or family doctor such as a respiratory specialist, an intensivist or respiratory physician. Those are all options.
Just for any intensivist watching this, we are looking for our own at the moment. If you are interested, we would want to hear from you. If you want to join our team as an intensivist, ICU consultant, or ICU specialist, we absolutely want to hear from you.
Now, if you’re an intensive care nurse with a minimum of two years ICU experience, or a pediatric intensive care nurse, or an ED nurse, all ideally with a critical care, postgraduate qualification, we absolutely would want to hear from you. If you have a passion or an interest in home care, we want to hear from you. Please go to our website at intensivecareathome.com and contact us there or simply send us an email to [email protected].
Anyway, coming back to your sister’s situation. It’s no more complicated really from what I described so far. The only other thing that I would like to highlight is staff selection. You’ll need a 24-hour nursing roster at home with ICU/pediatric ICU, or ED nurses, critical care nurses in general.
We would want to help you with the hiring process. We want to introduce staff to you with meet and greets. Then, with training shifts in the ideal scenario, we can start with some training shifts in the hospital so we can get to know your sister, we can get to know her preferred routine, we can understand her preferences. That would be ideal.
But even if we can’t do training shifts in the hospital, we can still take you home. We’ve done it many times and we are well tuned in with our clients’ preferences and what they need in a home care setting. I really hope that helps to answer your question on how we can take your sister home. It’s not more complicated than that, and the sooner we can get the ball rolling, the better.
Now, if you want more information or if you have any questions about the services, just again contact us at [email protected] or call us on one of the numbers on the top of our website at intensivecareathome.com.
I also briefly want to highlight the exact services that we are providing at home. As I said, we are providing services for anyone at home that needs ventilation, tracheostomy, that’s not ventilated but has a tracheostomy, home non-invasive and ventilation such as BIPAP and CPAP, again, tracheostomy care. We send 24-hour intensive care or critical care nurses into the home. We provide 24-hour monitoring. We provide home TPN, as well as enteral feedings either by a nasogastric tube or PEG tube. We manage central lines, PICC lines, Hickman’s line, port management at home, IV fluids, IV antibiotics, and of course psychosocial care.
As far as I know, we are the only service in the English-speaking world that has third party accreditation and NDIS accreditation for Intensive Care at Home. We have built all the intellectual property for this type of service.
Now, let’s move along to any other questions that came in this week. Let me just go to my emails so that I can answer some of the questions that came in this week.
If you have any questions in the meantime, type them into the chat pad here, or if you want to come live on the stream, let me know and I can let you in. You don’t need to go on camera, you can just come on without going on camera.
Now, here is another email from Christian who writes in, “Does a doctor’s negative attitude affect how he’s treating my sister? He told her husband that there’s a fine line between hope and delusion and he needs to get in touch with reality. I hope this doesn’t affect decisions the doctor is making in regard to my sister’s treatment. I’m appalled at this horrible bedside manner. She’s in an induced coma with serious TBI (Traumatic Brain Injury) and skull fracture. She has been in ICU and in an induced coma for two weeks.” Well, that’s a great question Christian, and I’ve made countless videos about how negative ICUs are in general and that you should not let that negative attitude walk you down and you should not let that negative attitude stop you from creating your own narrative.
I made a quick tip video this week, “How to create your own narrative when your loved one is in ICU?”, and really, you cannot let that negative attitude from the ICU doctor create your own narrative and you can’t let that stop you from getting the best outcomes your sister wants.
For example, when he says, “The doctor told my sister’s husband that there is a fine line between hope and delusion and that he needs to get in touch with reality”, I argue this is a very inappropriate statement. 90% of patients in intensive care survive. So, why should you assist that the 1 out of 10 not surviving.
Now again, this week for example, I also recorded a podcast with one of our intensive care hotline clients who was in ICU last year in January or February, and he had a severe TBI. He fell off a scaffold. It was a workplace injury. The ICU team wanted to withdraw treatment early on. They were basically lining him up to let him die. The family reached out to us and said, “Look, this is our situation. We don’t want our dad to die. We want him to live. What are our options here?” As soon as I had an understanding of what was happening there, the ICU for example, never educated the family on the option of a tracheostomy that the family had no idea what a tracheostomy is.
Tracheostomy basically gives the patient the ability to switch from a breathing tube in the mouth to a breathing tube in the neck, and that buys patient’s time to wake up to recover from the TBI. TBI stands for Traumatic Brain Injury and lets them recover in their own time. Now, this patient with our advocacy ended up with a tracheostomy, and I actually met with him about a month ago and his family. He’s walking, he’s talking, he can’t remember a single thing, but he’s walking, he’s talking, he’s regained most of his health. He’s a little bit slow still, but he’s alive and he’s very happy to be alive.
Yesterday, I had the privilege to get him on his family on a podcast that we will publish in the next couple of weeks. I need to read out the email again here from Christian to put this really in context. Where he says, “Does the doctor’s negative attitude affect how he’s treating my sister? The doctor told her husband that there’s a fine line between hope and delusion and he needs to get in touch with reality.” Take the example from our client that we had last year that I had on the podcast this week.
The family was told, “Well, there’s no hope. He won’t have any quality of life. He won’t survive. There’s no point in continuing.” Then, as soon as they more or less had a second opinion, and we said, “Well, what about a tracheostomy?” His life got turned around. He’s alive now. If the family had given into the negativity and had would’ve said, “Oh, well, we have hope, but are we deluded? Are we delusional?” Their loved one wouldn’t be alive today.
You got to put it in context of ICUs are trying to manage their downside. What I mean by that is if they told you and your sister’s husband that, “Oh, well, we treat your sister for the next three weeks and then she’ll walk out of ICU and everything will be great”, and it doesn’t happen, you could potentially sue them. What they’re telling you is pretty much, “Don’t put your hopes up too high so you can’t sue us.” But you got to read between the lines here.
Again, once again, you have to create your own narrative. You have got to get that second opinion. You got to have someone talk to the doctors directly. You have to have us here Intensive Care at Home and Intensive Care Hotline involved so that we can talk to the doctors directly, find out what’s really happening. We have to look at the medical records and then give you that second opinion just like we did with our other client.
Then you’re saying, Christian, in your email here, “I hope this doesn’t affect decisions the doctor is making in regard to my sister’s treatment.” Well, it does affect if you are not pushing back, that’s when it starts affecting your sister’s treatment. If you are not pushing back, if you don’t get informed about what’s really happening in ICU, yes, it will impact.
The biggest challenge for families in intensive care is simply 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. That’s exactly what Christian is dealing with.
Over and over again, we see that ICU teams are only telling families half of the story. If you don’t come in with the right questions, if you don’t get informed, if you don’t have a second outside opinion of someone like ourselves here who understands intensive care inside-out, well, they will walk all over you.
I can understand that you are appalled at his horrible bedside manner. I can totally understand it, then that I’ve worked in ICU for over 20 years. I know the bedside manner of some people, and that is what you should be doing in this situation, Christian. Push back, get that second opinion, and do not give up. Do not give up. If it comes to the point where your sister can’t be weaned off the ventilator, she’s not waking up. Then again, look at options such as Intensive Care at Home.
Then Christian also says, “I’m so lost. Should I wait until they wake her up to go and see her? They’re starting to reduce the sedation where maybe she will wake up.” Christian, you should absolutely see your sister and talk to her. Make sure she knows that you’re there for her, that you love her, and encourage her, talk to her. It’s very important. I hope that helps.
Let’s get on to the next question from our email. There was an email, “The doctors recommended not to let my mom suffer. Now, she’s suffering, or she’s recommended to go to hospice. The hospice wanted me to sign a DNR (Do Not resuscitate) before even accepting, admitting her to their hospice facility. More questions were asked, and they answered they were going to stop the ventilator, and if she breathes on her own, they will work with her. We declined. Please help.” Let me read that again. “The doctors recommended for my mom not to let her suffer. Now, she’s suffering, or she’s been recommended hospice. Hospice wanted me to sign a DNR before even accepting or admitting her to their hospice facility. More questions were asked. They answered they were going to stop the ventilator. If she breathes on her own, they will work with her. I declined.”
Here’s the thing, what is suffering? What is it? It’s a subjective experience. Most patients that survive intensive care do suffer one way or another. If you ask them after suffering and after surviving intensive care, would they rather be dead? You’ll probably get the answer of no. Most patients want to be alive. Most people want to be alive. Again, the first question is easier. What does suffering mean? It’s a subjective experience. What you might perceive as suffering I might not perceive as suffering and vice versa. Is it psychological suffering? Is it physical suffering? Is it mental suffering? You got to draw a distinction. There’re going to make a distinction there.
The ICU has probably done a good team to tell you that your mom is suffering, but what is your own judgement? Why do you think she’s suffering? Does she have an advanced care directive? If she does have an advanced care directive, what does it say? Does she want all things to be done? Does she want treatment to be done?
Now, then you mentioned actually they recommended hospice. It sounds to me like you agreed to let her go to hospice and then they were trying to force you to sign a DNR. Now, for those of you that don’t know what a DNR is, a DNR stands for Do Not Resuscitate. Other synonyms are NFR, which stands for Not for Resuscitation. The question here is, do you want that? Do your mom go to hospice with a DNR knowing full well that if she does arrest, if her heart stops, God forbid, that they wouldn’t perform CPR, is that what you want? It all comes down to what you want and what your mom would want. It’s not a right or wrong answer, it’s what you want.
How can you be sure that is the right thing? It really depends on your beliefs. If you are religious, on your spiritual beliefs, on your cultural beliefs, on your values, that’s really what it comes down to.
Then you are saying, they told you that they were going to stop the ventilator. Now, I know you’ve refused, and you had your reasons why you refused. The reality is that if someone goes to hospice and they stop the ventilator, that’s an end-of-life situation and you need to be clear on that. Do you want her to be in an end-of-life situation? Do you want her to die? Do you want her to continue what might be perceived as suffering and give her a chance to survive?
Now, also with a lot of hospitals nowadays seem to work with these deadlines where families come to us and say, “Tomorrow at three o’clock we want to stop life support”, and that is illegal. Now, hospitals will try that nevertheless, and we have turned many such situations around because we have tools, we are professional advocates, we do understand the rights of patients and families, we do understand the rights and the responsibilities of hospitals and ICUs.
End-of-life once again, does not happen in a vacuum like hospitals want to pretend. They want to pretend that they can do whatever they like, and if you do not question, they will do whatever they like. Please make sure you are educated on your rights. I hope that answered your question that you know have every right to prolong treatment for your mom.
Furthermore, one last thing. even if your mom is not going to survive for whatever reason haven’t shared enough information for me to say that she will or she won’t survive, but even if she won’t survive, most families just want to have a say how end life is happening, how much time, what does it look like? Who needs to see your mom before she’s potentially moving towards end-of-life? You want to have a say in that. Then again, with Intensive Care at Home, for example, we can provide end-of-life care or palliative care at home. No reason we can’t do that. Just consider all of your options here, including Intensive Care at Home.
Let’s move on to the next question that came in from Jeff. Yes, it’s actually not a question. It’s actually a nice email from Jeff that pretty much confirms everything that we are saying here. It’s from Jeff and he writes, “If the family ever looks at the negatives, never give up hope. I’m a survivor of all the same conditions that Patrik talks about in his blog, and my parents had to go through everything this person had described, and the hospital and my family never once gave up hope or supporting on me. I’m eternally grateful for all the love and support I’ve received from everyone. I won’t always return to normal, but you’ll still have remaining years, days, minutes with loved ones.” I think I’ll read that out again, because I think it really speaks to the core of what we are doing with Intensive Care Hotline and Intensive Care at Home.
This is actually in response to one of my videos online and Jeff says, “If the family ever looks at this, never give up hope. I am a survivor and conditions and my parents had to go through everything this person had described at the hospital, and my family never once gave up hope or support on me. I’m eternally grateful for all the love and support I’ve received from everyone. I won’t always return to normal, but you’ll still have remaining years, days, minutes, with loved ones.”
Let’s go on to the next question. The next question is from Ashley. Ashley has asked, “Can a hospital require me to move my mom to LTAC on a ventilator and dialysis for renal failure?” Now, I presume your mom would have a tracheostomy. I presume that’s the case, otherwise they wouldn’t ask for LTAC (Long Term Acute Care). If someone has a ventilator with a tracheostomy in the U.S., the push is often there to go to LTAC.
The first question is, does your mom have a tracheostomy? The next question is, does she have a PEG tube? Why is this important? Your question becomes obsolete if your mom doesn’t have a PEG tube. LTAC usually only take patients if they have a ventilator, tracheostomy, and a PEG tube. If your mom is fed through a nasogastric tube instead of a PEG tube, she won’t go to LTAC. LTAC cannot manage a nasogastric tube.
Now, let’s just say your mom does have a PEG tube and a tracheostomy and a ventilator, then it gets more difficult because an LTAC would actually take her most of the time, assuming she’s stable. Can she go to an LTAC with dialysis? Well, not all LTACs do dialysis, so that limits the options.
But can they force your mom? Look, I’d say yes and no. Most of the time we can put a stop to it. The reason we can put a stop to it is simply, and again, by potentially exposing medical negligence, but also by when patients don’t have a PEG tube, we tell families, “Don’t give consent to a PEG tube”, full stop. That really puts a stop to it. No one can force you to give consent to a PEG tube. It’s surgical procedure, no one can force you to give consent to a surgical procedure. That really puts a stop to it.
Now, can they force you? Again, yes and no. Patients have usually 90 days in a hospital in the U.S. Medicare, and then they can push them out to LTAC. But once again, only if you have given consent to a PEG tube. Again, our advice is do not give consent to a PEG tube because that’s more or less the vehicle that gets patients into LTAC. If you’re not giving consent to a PEG tube, what are the hospitals going to do? They can’t force you to sign up for a PEG tube. That hopefully answers that question.
Now, let’s move on. Let’s move on to the last question for today. This is a message from Sarah. Sarah writes us,
“My dad was brought into intensive care on the 4th of April after having an epilepsy seizure whilst in a canal boat and fell into the water. He was still seizing after they removed him from the water fairly quickly as he had no evidence of drowning in his lungs, but his heart stopped but was started again and then transported to hospital.
They immediately didn’t think it was positive and told us to say goodbye. However, being put into an induced coma, he became stable whilst we were there on the fourth. Then in the fifth, his vitals recovered. He contracted pneumonia. But a day or so later, his lungs looked normal apparently.
They reduced his sedation the morning on the fifth, but he started feeding again. They felt it was best to re-sedate him. The following morning, they reduced sedation. However, I felt he was still feeding as he was best to re-sedate him. The following morning, they reduced sedation. However, I felt he was still seizing as he was twitching in his face, and I didn’t seem to do anything about it, and they didn’t seem to do anything about it. Until the following day, they gave him stronger medication for it.
We were told again, doom and gloom, he won’t make it. He hasn’t woken up yet. This was on the fifth as well. The seat, he started yawning and having small facial expressions but nothing consistent in opening one eye. But again, not consistently.
We get to Saturday, and they said they did an EEG a few days ago and a CT scan of the brain and we’re going to give the results, but the EEG was clouded by the seizures, and the CT of the brain showed apparently a normal brain, so they were lost to understand, we had no questions to ask. We didn’t know what to ask.
Now, it’s Monday, and they have reviewed the images again and have said, “It’s unlikely to have any recovery or quality of life.” They said that if he has a heart attack or has anything occurring between now and when we go in tomorrow, they won’t be resuscitating him.
My question is, what should we be asking? How can the same scan change? Are they allowed to just say it’s over, pull the plug? We are lost with what to even ask.
Many things for your website. I’m so glad I found it today.
From Sarah.”
First things first, they can’t just pull the plug. For sure, that’s illegal. Can’t happen in a vacuum. That’s the first thing. Now, other things you should be asking for, what medications is he on? For example, if he’s waking up and he’s having seizures straight away, they may not have optimized his anti-seizure medications. If they have not optimized seizure medications, I’m not surprised that they’re taking off other sedation and then he’s going into seizure mode straight away.
Now, the next thing that you should be asking for, it’s really from head to toe, “Well, why does the CT scan change?” I don’t know. I really don’t know. Maybe it was a case of him seizing versus not seizing. It’s hard to say. That’s why you also need neurology input. You will need input from a neurologist in a situation like that.
Other things you should be asking for is, what sedatives is he on? What opiates is he on? For example, if he’s on propofol for sedatives, it’s less likely for him to be seizure-free. If he’s on midazolam/Versed, it’s more likely for him to be seizure-free because midazolam can prevent and stop seizures. As you can already see, the devil is in the detail here, what questions to ask.
Next, if he’s on antiseizure medications, what is he on? What’s the dosage? Is it a high dose? Is it a low dose? What are the medications as such?
Next, is he hemodynamically stable? He had a heart attack, or a cardiac arrest. The question really is, is he on inotropes? Is he on vasopressors? Has he had an angiography to see where the blockages in the heart vessels are? Does he need potentially cardiac surgery? What if the cardiologist or cardiac surgeon said after he had the cardiac arrest? What are the underlying issues? Is he in a normal or abnormal cardiac rhythm, heart rhythm? Is he in a regular sinus rhythm or not in a sinus rhythm? Because if he’s, for example, in atrial fibrillation, that puts him at risk of a stroke, which could be detrimental to what’s already happening in the brain.
Now, other questions are, did he have a hypoxic or anoxic brain injury as part of the cardiac arrest and potentially no oxygen perfusion to the brain? How long was the “downtime”? How long did they resuscitate him for? And how long did it take to get oxygen back to the brain?
Next, has he gotten an infection of any patients in ICU end up with an infection? Does he have a pneumonia? Does he have a temperature? What are his blood results? Is his white cell count normal? Is his hemoglobin normal? Does he have a temperature.
Also with a cardiac arrest, was he in cooling therapy? Many patients that go into ICU after out of hospital categories go into cooling therapy to protect the brain and protect all major organs. That cooling therapy usually takes 24 hours and then patients are being slowly woken up.
Next, are other organs affected such as the kidney, such as the liver, such as the lungs, does he have a pneumonia? Like I said before, did he potentially aspirate? You talked about drowning. Did he aspirate in his lungs? Does that have an impact on what’s happening at the moment?
So, there are a number of unanswered questions, but the quickest way to get to the bottom of it is really for us to talk to the doctors and nurses directly and get the full picture or look at medical records, ideally do both. I hope that helps.
Now, I do want to wrap this up for today. If you have any questions, you can type them into the chat pad now.
Let’s wrap this up today.
Now, if you have a loved one in intensive care and you want to go home, especially when it comes to long-term ventilation, tracheostomy, noninvasive ventilation, such as BIPAP, CPAP, tracheostomy care at home, 24-hour ICU monitoring at home, home TPN, antibiotics at home, IV fluids at home, you should contact us at intensivecareathome.com. Call us on one of the numbers on the top of our website or simply send us an email to [email protected].
Again, with Intensive Care at Home, we’re operating all around Australia, in all major capital cities and in remote and rural areas. We also provide specialist support coordination for Intensive Care at Home and specialist support coordination.
We are a TAC approved service provider in Victoria, we are an iCare approved service provider in New South Wales, DVA-approved service provider all around Australia. We get funding through the Department of Health and hospitals as well.
Now, if you have a loved one in intensive care, you need general advice, you need consulting advocacy, please contact us at intensivecarehotline.com. Call us on one of the numbers on the top of our website or send us an email to [email protected].
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, and we answer all questions, intensive care and Intensive Care at Home related.
Last but not least, as I said, we do provide NDIS nursing assessments for our clients, and if you need a medical record review for your loved one in Intensive care in real time or after intensive care, we can do that as well. But we obviously highly recommend you get a medical record review in real time so you can actually have a second opinion in real time.
Now, thanks for watching.
Like the video, subscribe to my YouTube channel for regular updates for families in intensive care and Intensive Care at Home, share the video with your friends and families, click the like button, click the notification bell, and comment below what you want to see next, or what questions and insights you have.
This is Patrik Hutzel from Intensive Care at Home and intensivecarehotline.com, and I’ll talk to you in a few days.
Take care.
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.