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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,

TRYING TO GET INTENSIVE CARE AT HOME WITH VENTILATION & TRACHEOSTOMY & DIALYSIS CARE FOR MY MOTHER

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

https://intensivecareathome.com/trying-to-get-intensive-care-at-home-with-ventilation-tracheostomy-dialysis-care-for-my-mother/

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

Your Questions Answered Live! For Intensive Care at Home

 

Good morning, good evening, good afternoon, wherever you are. Thank you for watching this YouTube live stream. It’s another session of Your Questions Answered Live. My name is Patrik Hutzel from intensivecareathome.com and intensivecarehotline.com. I’m here to answer all of your questions intensive care related and we have viewers from all over the world. So, I want to welcome you and even if you’re watching the recording now, even if you’re not live on the show, thank you for watching the recording and thank you for your support.

So, before we dive right in, you may want to find out what makes me qualified to talk about your questions in intensive care. Again, my name is Patrik Hutzel. I’m a critical care nurse by background. I have worked in intensive care/critical care for the last 25 years nearly in three different countries. I also have worked as a nurse unit manager for over five years in intensive care. I have been consulting and advocating for families in intensive care for the last 10 years as part of my intensivecarehotline.com consulting advocacy service. And I’m also the founder and managing director of Intensive Care at Home where we send intensive care nurses into the home to look after long-term ventilated adults and children with tracheostomies where we provide BIPAP, CPAP ventilation at home where we look after medically complex adults and children at home instead of intensive care. We also provide home TPN. So, my passion is intensive care and Intensive Care at Home.

And just a little bit of housekeeping, if you have any questions, please type the questions into your chat pad. But you’re also welcome to dial in live on the show and ask your questions live on the show. I’ll type the phone numbers into the chat pad and depending on which country you’re in, you can just dial the local number and you’ll get me live on the show here and we can discuss and answer your questions. So, I encourage you to type in your questions into the chat pad.

In the meantime, while I’m waiting for your question, I’ll just start with the first question and that is a question we had this week. We get a lot of emails and I’ll answer those questions from the emails that we get this week and I’ll just start there to begin with.

This is a question that we had this week from John, and John says, “My dad won’t wake up after being cooled. He has a tracheostomy and cannot give a thumbs up or wiggle his toes, but he will look and blink his eyes when we tell him, “Blink your eyes 10 times if you can hear us.” The MRI is normal. The CT scan is normal. The vital signs are normal. He’s trying to breathe above the ventilator. He’s just having a tough time giving a thumbs up but can squeeze his hands.” So, John, if you’re saying that your dad won’t wake up after being cooled, I would imagine that he’s had a cardiac arrest. Most patients that go into ICU are being introduced or induced into a cooling therapy usually have an out-of-hospital cardiac arrest.

Now, you haven’t shared how many days your dad has been in ICU, and you haven’t shared how many days your dad has been in ICU. You haven’t shared how long was the “downtime” while he had the cardiac arrest? How long did it take to get circulation back? But the good news is that if the MRI and CT scan of the brain are normal, then the only thing between your dad waking up and is probably the number of days he was on sedation and on opiates.

So, couple of things there, while he was in cooling therapy, he would’ve been induced into a coma possibly with some propofol and/or midazolam also known as Versed. Probably would’ve been in an induced coma with some opiates such as fentanyl or morphine, possibly high doses because cooling therapy can be quite uncomfortable. Temperature can go all the way down to sort of 33, 32 degrees Celsius, which is probably around 93 Fahrenheit or something like that.

And sometimes patients don’t tolerate that well and then they are also sometimes having paralyzing agents, so they’re also paralyzed on top of the induced coma. And the longer someone is paralyzed plus the induced coma, the longer it takes for someone to wake up from my experience.

Now, on top of that, if your dad was cooled and had a cardiac arrest and there was clearly hypoxic or anoxic brain injury, which sounds to me like has been ruled out now, but other things that can happen as prophylactic measures, your dad might have had antiepileptic drugs to prevent seizures because the risk of seizures happening after cardiac arrest and potential hypoxic brain injury is there. And they might have started him on Keppra or on phenytoin prophylactically and they have some sedative effects as well.

Now, on top of that, you got to think, if your dad had a cardiac arrest, he’s very, very sick. He’s very, very unwell, which means you got to give him time to wake up. Just because someone is technically coming out of an induced coma doesn’t mean they wake up like that at the drop of a hat, not after such a significant event like a cardiac arrest. We all want to speed up the process of waking up in ICU. Reality is that patients are very, very sick and they just sometimes need time.

Again, the good news is MRI and CT scan of the brain are normal, that is good, and he’s doing some purposeful movements and he’s breathing above the ventilator from what you’re telling me. So, those are all good signs that you should be focusing on.

So, what are the next steps here? The next steps are he needs to continue waking up and they need to keep stimulating him. They need to keep talking to him. They need to do physical therapy or physiotherapy, movement of body, hands, arms, limbs, and keep encouraging him to wake up. And you haven’t shared whether how many days. You haven’t shared whether your dad is on a breathing tube with a ventilator or whether he’s got a tracheostomy. Either way, whether he’s got a breathing tube or tracheostomy, he needs to be weaned off the ventilator and hopefully can be extubated and then move on in his progress to go out of ICU and go onto some rehabilitation ideally without a tracheostomy. It sounds to me like that can be achieved on what you’re sharing with me.

Most important lesson here, John, is be patient. I know that’s easier said than done, but from your email, there is way more positives than negatives. Many patients that come into intensive care after cardiac arrest have hypoxic brain injury depending on how much “downtime” that was, how long CPR took, and how long resuscitation took. So, you should have every reason to be optimistic here and get your dad out of ICU without a ventilator, without a tracheostomy, with a functioning brain. That would be my answer to your question here.

So, let’s move on from this question this week. I also had a question or more of a discussion with a client, with a longstanding client of ours who has their father in and out of intensive care for many years, but their father is finally home, and they don’t want him to go back to intensive care whatsoever, and they’ve got a few nurses at home. The client is not like an Intensive Care at Home client like we do here in all metropolitan cities in Australia. It’s not an Intensive Care at Home, the client is actually in the U.S., but he’s had a question this week. He said his dad has pleural effusions on both sides. That’s been verified by a home x-ray. It’s been verified by an ultrasound of the chest, and they are wondering, does he need to go to hospital? How should they treat the pleural effusions? Clearly, he has difficulties breathing.

What should they be doing? And my recommendation to that was that they should be talking to a respiratory physician or to a pulmonologist and see whether the pleural effusions need draining and they should probably also do an ultrasound of the lungs to see how much volume is there and so forth. So, that’s just quickly to throw that in there.

Next question is from Doreen, and Doreen writes in, Doreen says,

“I’m writing because while doing some research about my options for my father who is in long-term acute care facility in the U.S. also known as ventilation weaning facility, and every day he’s there, he seems to be regressing and deteriorating. He was transferred from one of the best ICUs in the nation to there about a week ago, which is not a great place at all. The only top place had no beds available. So, we had no choice but to put him in a subpar place. I want him home. Is it possible to have him home through your company even though you’re based in Australia? I’m in the United States.

Do you work with families here? He was making strides and seem to be about a week away from being weaned from the ventilator while he was in ICU. But now, he’s in this other place which is not an ICU and doesn’t seem to be prepared to wean my dad off the ventilator. They have no machines, do no testing medication, or even doctors unless called in. I need help. I’m desperate and my father deserves the best and he deserves to be home.

If it wasn’t for a mistake in the first ICU, he went to October the 31st, he would never be in this situation. He went in the hospital because of a UTI (urinary tract infection) and he’s now in a facility on a ventilator with a tracheostomy. It makes no sense. Is there any way your company can educate me on my options and let me know if you provide services here in the United States?

Thank you kindly.

From Doreen.”

Thanks, Doreen, for your question. Well, it is now too late obviously. If you had contacted me at the stage where your dad had a tracheostomy, what are the next steps? I would’ve advised you not to go to LTAC (long-term acute care) under any circumstances. And it sounds to me like he was very close of getting off the ventilator while he was in ICU, and you should have probably hung out there for another week or two and get him off the ventilator there rather than sending him to LTAC. But that’s neither here nor there because that’s not the situation you are in.

All I can say here is put out another word of warning for families in intensive care in the United States, do not go to LTAC. I’ve been making plenty of videos about that and plenty of evidence there that LTACs are not the right place for someone to wean off the ventilator because simply they don’t have the skills. They don’t have the knowledge. They don’t have the skilled ICU staff that is needed to work with weaning patients off ventilation and that’s verified by. Look at the online reviews from LTACs. Look at them and you will see they have one, two-star ratings at the most.

Again, the email says going back, “They have no machines, do no testing, diagnostics, medication, or even doctors unless they call them in.” I mean, patients are going from intensive care on life support on ventilation and tracheostomy to a facility without doctors, without diagnostics. If people in a hospital go to a hospital floor without ventilation and tracheostomy, they get the care they need and deserve. And that’s clearly not happening in LTAC in the United States.

So, in terms of us, Intensive Care at Home going to the United States, unfortunately we are still not there yet. We are working on it. What you can do is you can contact an organization called Bayada, bayada.com. I know they’re providing some home care for some ventilated clients in the home, in certain areas in the United States. So have a look at their website, bayada.com and check them out there.

The only other thing that I need to stress is you can’t really go home in a situation like that without intensive care nurses, 24 hours a day, because you can already see that they’re struggling in LTAC. LTAC doesn’t have intensive care nurses, 24 hours a day, so you’re putting your dad at risk if you are going home without intensive care nurses, 24 hours a day.

And last but not least, Doreen, you haven’t shared where you are. If you are in New York City, please contact me privately and I can probably put you onto one of our contacts in New York City. Please send me an email to [email protected] or if you are in the U.S., you can just call me on the number that I typed in here, 415-915-0090 and you can call me and then I can set you up with our contact in New York City.

But quickly going back, the other thing you could do, Doreen, is you can see whether your dad can go back into ICU and hopefully they can wean him off the ventilator there. They are well-equipped to do that. I mean, the number of horror stories that I read out over the years here, the number of clients in the U.S. that I’ve spoken to over the years that have loved ones in LTAC and are literally begging us to get their loved ones out of LTAC is enormous. It’s huge and it’s never ending.

LTACs from our research has shown that they’re designed to save money. They’re not designed for clinical need. Patients in intensive care in the U.S. get pushed out of ICU very quickly as soon as they have a tracheostomy. It’s almost like bait and switch patients. Families get told, “Oh, your loved one needs a tracheostomy and a PEG tube.” The families consent to that without doing their research. And next thing they know, the very next day there’s a bed available in LTAC and patients are getting shipped out without families knowing what’s happening and then they find themselves in LTAC realizing what a disastrous area it is. Doreen, I hope that helps.

Now, again, type in your questions into the chat pad or call me live on the show to get your questions answered here. Call live on the show. You can get your questions answered here or type them into the chat pad.

I also had a question this week from a potential Intensive Care at Home client, how we send nurses into the home, especially for new clients, “Would Intensive Care at Home be happy to send nurses, ICU nurses without training on a particular client?” So, that’s the first part of the question. So, this is a question we get all the time from our Intensive Care at Home client.

Obviously, this is from a client in Australia and they’re asking, “When you take us home from ICU, would you be happy to send nurses without training?” So, here is the answer to that first part of the question. The first part of the question is, yes, we would because that’s how we got started. And the value proposition of having an intensive care nurse coming into the home versus having intensive care in a hospital, that’s exactly what we do. Now, what we need to learn about is obviously the routine and the preferences of a client. But in terms of making a transition possible from ICU to home, that is all we do.

Now, what we have done in the past, and this is a suggestion here, we could start with some shifts in the hospital in ICU to get to know your preferences, to get to know your routine, to get to know your care. We can do either way. We can start in the hospital, and we can also start at home straight away. We’ve done it many times, but we’ve done both. So that is how we work, and we’ve done it many times successfully. It’s also important that we get to know your preferences, but we can do that either at home or in a hospital.

The next question from that client is, “If my spouse isn’t available and I have no way of communicating, what would the nurse do on shift?” Again, I think we are not perfect, but we are pretty well-trained on reading on non-verbal cues of our clients because we’ve been doing it for so long and our staff are pretty cluey when it comes to reading non-verbal cues, especially in a home care environment. But the next question is, “Could you still mobilize me getting out of bed if my spouse wasn’t at home?” And the answer to that is yes, especially assuming you have all the equipment like a hoist, like a wheelchair, commode and so forth.

The client also says that “I know there are other Intensive Care at Home clients in similar situations and those clients don’t insist on training in a hospital. How do they manage new nurses?” So, how do they manage new nurses? Again, we would, generally speak, and send our senior staff to get you home to begin with and work out the routine with you and your spouse so that we can then pass it on to other team members. We would send team members that have worked with us for quite some time that are experienced in the transition from ICU to home. I hope that helps.

Rosa typed in some questions. Thanks, Rosa, for your questions. Rosa, you’re saying, “This is the scenario. I’m in the U.S.A. My dad is now in LTAC, and he has been there since Christmas. He has a tracheostomy, but he keeps failing the spontaneous breathing trials. LTAC has a 12-step program. My dad is stuck in sixth step. In addition, he’s in a tracheostomy, no other issues. Do you think my dad is being rushed? Now, they want to send him to a long-term facility. Also, a week ag, they put in a lateral chest tube to prevent water retention in the lungs. He started on October 29th in ICU, and they discharged him to LTAC on Christmas day, 25th of December to present.” Okay. Do I think your dad is rushed? I don’t know because you haven’t shared why does your dad have a tracheostomy to begin with, Rosa? Can you share more? Why does your dad have a tracheostomy to begin with? What got him into ICU at the end of October?

I argue there are no set timelines to get someone off a ventilator. There are weaning protocols, but if someone can skip steps for example, why would you go through a 12-step program if someone can potentially skip steps? Tell me more Rosa about why is your dad in ICU and in LTAC now? What got him into ICU in the first place? Why do you think he’s failing the spontaneous breathing trials? Tell me more.

So, “His lungs were weak. He was intubated for 14 days and then failed when extubated.” Why were his lungs weak, Rosa? Does he have COPD (chronic obstructive pulmonary disease)? Does he have asthma? Did he have a pneumonia? Did he have ARDS (acute respiratory distress syndrome)? Is there something else? Does he have lung cancer, God forbid? Is there something else? The more you can share with me, Rosa, the better. It’s difficult for me to say at the moment why is he not passing spontaneous breathing trials? Is it lack of mobilization?

“Yes, COPD.” Okay. He’s got COPD. Okay. All right. If he’s got COPD, A lot of COPD patients do struggle getting off the ventilator and I have seen long weans for COPD patients. How old is your dad, Rosa? Can you tell me how old your dad is? And can you tell me where there’s any other significant pre-medical history? While you’re doing that, with COPD, Rosa, most patients have a high CO2, also known as carbon dioxide baseline. So, I would imagine that if he’s not passing spontaneous breathing trials, it means his CO2 is probably rising and he needs to go back on the ventilator potentially with high PEEP, high pressure support, high volumes, not quite sure.

And your dad is 81 years of age. Now, age is not an obstacle to wean someone off a ventilator, but it can be. I guess, it’s easier for someone that’s young to be weaned off the ventilator compared to someone who’s 81 years of age. But again, that should not be an obstacle.

Yes, and now you’re confirming his CO2 raises. So, when his CO2 raises, Rosa, is he getting drowsy? Is he getting non-cooperative? Do you know what’s happening? Because that’s another thing. When his CO2 rises, does he get non-cooperative for example? Or is he getting drowsy? Is he getting sleepy? It’s almost like two steps forward, one step back type of thing. That’s one question. The next question is, is he getting mobilized? Is he getting out of bed?

“Heartbeat goes up.” Okay. All right. Is your father, would you say he’s depressed because of the situation he’s in? Would you say he’s in good spirits? Because there’s a huge psychological aspect of weaning someone off a ventilator as well. What I mean by that is, is he getting out of bed regularly? Is he getting physical therapy? I believe part of a good weaning regime is good personal hygiene, i.e., can he have a shower? Does he have regular bed baths? Ideally has a combination of both. Do they brush his teeth? Do they do good mouth care? Those are all very important aspects.

People will keep focusing on the ventilator and whilst that’s very important, there is a huge psychological aspect of weaning someone off a ventilator with very good basic nursing care. Especially, since he’s been in hospital since the end of October. That’s terrible.

Rosa, you’re saying, “I spend all day with him, and he was only mobilized two times during the day.” That’s terrible. So basically, what you’re suggesting is since the 25th of December, he’s only been out of bed two times. That’s madness.

“He’s only got a PEG (Percutaneous endoscopic gastrostomy) tube.” Yeah, sure. That is madness. And you’re saying he’s probably sad and desperate to speak? Sure, sure. “And he can’t speak yet.” Understood, understood. Can he at least write some sentences? Can he use a letter board, or can he use a pen and a piece of paper or maybe even type something into a mobile phone or an iPad? Is there any way of him communicating at all?

But coming to the mobilization part, Rosa, from my experience, you can’t wean someone off a ventilator without mobilization. It’s not going to happen. “And he’s blind.” Sure. Okay. “And you’re making sure he’s getting moved around more and he’s blind.” Look, I think the blindness should not stopping him from getting mobilized. It shouldn’t stop him from weaning off a ventilator.

Let me tell you a little bit more about the mobilization part, Rosa. So, your dad has been in ICU since the 29th of October, and he would’ve spent most of his time lying in bed. Picture this. If you’re lying in bed all day and you’re on a ventilator, the ventilator is doing most of the breathing for you, you’re breathing muscles decondition very, very quickly. Deconditioning in ICU is real. The longer someone is in ICU, the longer someone is in an induced coma. The reality of deconditioning hits in pretty quickly and it can take time for someone to gain the muscle strength back. And basically, what you’re telling me, Rosa, your dad has not been out of bed since the 29th of October. No wonder he’s struggling in coming off the ventilator.

And then obviously, you’re saying he’s sad and desperate. I can totally understand that. I’ve looked after so many patients in ICU that have an inability to get off the ventilator. Of course, they’re getting sad, desperate. They’re getting depressed. They’re losing the will to live.

Now, imagine they would just start with sitting him in a chair. That would strengthen his muscles. I believe it would strengthen his will to live. Imagine you’re lying in bed for three, four months. That in and of itself would make you depressed.

A good ICU, a good LTAC will mobilize patients as quickly as they can. But we know what LTACs are like. I’ve done many videos about it, spoken to so many people over the years that have loved ones in LTAC and the stories we are getting are just horrendous. It sounds to me like here is another story from an LTAC that doesn’t do what they’re supposed to be doing to wean someone of the ventilator.

Now, you’ve talked about a 12-step program, Rosa. Now, I’d argue that 12-step process or program doesn’t mean anything to me if mobilization is not part of that program every single day. I would like to see the program and I’d say well, it’s of no consequence that 12-step program, unless you’re mobilizing and you’re doing physical therapy every day and you are doing things like I just mentioned before.

Has your dad had a shower in those four months? I’m telling you from experience, a good ICU will make sure their patients will have a shower. It’s very labor intensive. It’s hard work, but that’s what improves the patient’s recovery, speeds recovery up. They’re less depressed.

I also think it’s about staff satisfaction because if you do that as nurses, you will see patients improve and you have more job satisfaction. It’s a win-win all around. So, if that 12-step program does not have mobilization as part of it, does not have showering in it, I’d say all the other steps are almost obsolete.

You’re saying, “My dad is not getting mobilized enough and I don’t know if he’s had a shower. I will ask today.” Yeah, sure. Ask. I argue, Rosa, if he’s not getting mobilized, it’s unlikely he has a shower. I’m not ruling it out and I hope he does. But usually when you mobilize someone just to illustrate that for you, when you mobilize someone in a chair, then you can mobilize them in a shower chair and you wheel them to the shower, to the bathroom, simply as that. So, that would be my recommendation.

The trouble that you’re having in LTAC is most staff are not ICU trained. Most staff don’t have enough experience to wean patients off a ventilator. You have already shared that there’s no doctor on site. Who would be overseeing a ventilation wean if a doctor is not on site? Yes, there’s probably a respiratory therapist somewhere in the mix. You haven’t shared how often a respiratory therapist is coming.

But you can see with patients being critically ill and immobile, muscle wastage is real, deconditioning is real. Muscle wastage and deconditioning includes the respiratory muscles. And imagine you’re sitting up, you need to sit up right, you need to strengthen your upper body. That in and of itself will help improve your breathing muscles and that way you can start to breathe more and more independently if that makes sense.

So, Rosa, I don’t have a quick fix for you, unfortunately, but I hope that helps in terms of what the next steps are.

Now, you are saying, “My dad is stuck at the sixth step.” Do you know what that sixth step is? It would be great if you could share the 12-step program here because then we could go through it one by one, and I can give you my take on things. We could certainly do that. That would be amazing.

So yes, Rosa, if you wanted to share the 12-step process that would be helpful. If you have any other information that you think would be valuable to help you with this situation, please type it in the chat or you can also dial in.

In the meantime, I’m reading out the next question.

You’re saying, “I witnessed a trial. He only lasted 30 minutes on his own.” So, when you witnessed this, Rosa, was your dad in bed or was your dad sitting out of bed? And then you’re saying the ventilator is at 50% with the PEEP of 5. So, the question here is this… “Yes, in bed.” Of course, he’s failing a weaning trial in bed or a spontaneous breathing trial in bed because he has no upper body strength. That’s why he’s failing the weaning trial.

His breathing muscles… So, your dad was in ICU. He was immobile. He was deconditioned. He was in an induced coma until he had the tracheostomy. So, it doesn’t take long for the muscles to waste and get deconditioned. And then once he’s been to LTAC that’s almost two months since he’s been admitted to ICU. They should have started mobilizing him in ICU. I am not surprised that he’s failing a weaning trial in bed unfortunately. He needs to get out, the sooner the better.

So, you are saying that “The ventilator is at 50% with a PEEP of 5.” So, if you’re saying is failing spontaneous weaning trials, what that means is they would swap him from a controlled ventilation mode, i.e., SIMV, CMV, and others, or pressure controlled where he gets a set rate of breaths delivered by the machine every minute. So, let’s just say he is on a SIMV mode with 12 breaths per minute, guaranteed delivery from the machine. And let’s just say he’s breathing 12 breaths and from the machine and then he’s breathing eight breaths on top of that, a total of 20. So, 12 from the machine, he doesn’t need to do any work. And then he’s breathing another eight breaths on top of that. And then they reduce the rate of 12 down to six, for example, and then your dad’s respiratory rate goes up because he’s not getting breaths.

So, then they put him back and then maybe they do another trial and then maybe they swap him over to a spontaneous ventilation or such a CPAP or a pressure support and that’s when he’s failing. But again, he will continue to fail that unless they start with breathing exercises, unless they start with mobilization, strengthening his breathing muscles.

“We had 23 breathings from the machine.” Sure. Question is are they 23 breaths per minute guaranteed by the machine or are there, for example, 20 breaths guaranteed per minute from the machine and then his breathing three breaths on his own? So, the devil is in the detail there. Also, if his ventilator is still at 50% oxygen, it needs to go down to 40% or below. I hope that helps, Rosa.

You know what needs to happen next.

“23 by the machine.” Okay. Yeah. That’s fairly high. You know why it’s high? It’s high because he’s got a high CO2 (carbon dioxide). One way to get CO2 down is by breathing faster. That’s one way to get CO2 down. Not the only way, but it’s one way. So, that might stand in his way of getting weaned off the machine as well.

So, what they might start to begin with is are they using BIPAP? Are they using BIPAP with that 23 breaths per minute? So, the ventilation mode plays a big role. One way to get CO2 down is by using BIPAP. You might need 23 breaths from the machine and needs some BIPAP pressure. I hope I’m not getting too medical here, but that might be a starting point. But I sound like a broken record here, Rosa. He needs to get mobilized. He needs to get a shower.

Imagine his quality of life has been so poor. I think that’s fair to say. His quality of life has been so poor since the 29th of October. Imagine he’s getting mobilized on a day-by-day basis. Imagine they start to shower him. If you’re lying in bed for four months, your brain is shutting down. So, that mobilization part is critical, and you are very welcome, Rosa. Keep asking questions as I’m going along here with other questions that we had this week.

Next question is from Laura. “My five-year-old son is currently in the pediatric ICU. He was diagnosed with enterocolitis which led to sepsis. He was ventilated on the 29th of December ’22. His blood pressure dropped, and he also required dialysis for his kidney failure. He developed compartment syndrome in his left calf and was operated on. He has been on morphine, fentanyl, and a variety of other drugs. They removed all sedation aside from some morphine and extubated him on the 11th of January. But he’s struggling to open his eyes. Is this normal?” Wow. I’m sorry Laura to hear about your son’s situation.

Is this normal? Well, with your son having had a compartment syndrome and the enterocolitis, it sounds like he would’ve needed to be heavily sedated. I would imagine that his compartment syndrome caused him a lot of pain and therefore they would’ve given him a fair amount of fentanyl and morphine and possibly also midazolam or propofol. Then, you’re also mentioning that he was in kidney failure.

So, a combination of kidney failure where it takes longer for sedation and opiates to be washed out of the body. And with him having had compartment syndrome and where he needs to be pain managed to a degree, I’m not surprised that he takes his time waking up.

So, what you need, again, easier said than done, you need to be patient here. There’s no indication from what I understand that your son has any brain damage even though if he’s not waking up. They probably should be looking at doing a CT of the brain doing an MRI scan of the brain to rule out any brain damage, stroke. God forbid. That would be one of the next steps. Other things keep coming back to what I said a minute ago.

Other things are things like mobilization, physiotherapy, physical therapy, stimulating, maybe read him out children’s books. Maybe play his favorite music, movie. Keep stimulating him. Keep talking to him and I’m sure that in due course, assuming there is no brain injury, he will wake up. So, just be patient here.

Again, like with many adults as well, it can take time to wake up. Your son has been very critically ill, and he might just need time to recover, and he might just be just simply not ready to wake up irrespective. We all want to speed up waking up of course, but he might just simply need time.

Let’s get on to the next question before we wrap this up for today. “So, my daughter keeps getting MRSA (Methicillin-resistant Staphylococcus aureus) in her tracheostomy since they put it in at the hospital yesterday. I told them that to start her on home heavy antibiotics and she was swollen. So, to give her liquid Lasix because she was holding fluids around her lungs. They told me that the pneumonia today, the x-ray looks 80% better. I want to bring her home. She’s giving up in there. What do I do?” So, a lot of patients in ICU get MRSA. Now, MRSA is not necessarily something that’s deadly. It’s definitely concerning, but she might just need antibiotics and actually go home. Now, you haven’t shared your location, but if you’re in Australia, you should contact us for Intensive Care at Home and then we’ll help you take your daughter home. If the pneumonia is improving, that is really good. Once the pneumonia is cleared, we can take her home. There’s no issue there. But you have other questions there as well.

“They started her back on the ventilator yesterday with the tracheostomy because she has low oxygen saturations from the fluids in the lungs. And you mentioned potentially like giving Lasix.” Yes, giving Lasix to get rid of the fluids on the lungs, but it could be as simple as suctioning her. It could be as simple as putting her on a fluid restriction. Those could be the next steps or would be the next steps.

You said, “She was supposed to have a swallow test, but she can’t now because she’s back on the ventilator. I was hoping she could get the tracheostomy out. The question is not quite clear to me, but what you can definitely do is the MRSA happens unfortunately in ICU. It’s probably something that’s concerning, but it’s another sign that you probably should go home because there’s no MRSA at home. MRSA is a hospital specific infection. We don’t have that with our clients at home with Intensive Care at Home.

So, the best next step for you really is to get your daughter home. And again, if you are in Australia, you should contact us at intensivecareathome.com with one of the numbers on the top of our website and we’ll help you in taking the next step to take her home and also help the hospital to manage that bed block. We can give Lasix at home. We can manage many things at home, including home x-ray now.

Now, next question is from Lauren. Lauren says, “Hi, Patrik. My newborn just got diagnosed with chronic lung disease and she is on a CPAP ventilator. She now has low lung reserve. Her lungs are too small for her body and also, she has been on high flow. They now tell me she will be on CPAP for life. Can I ever take her home on a CPAP ventilator to make life comfortable for her? She’s so used to the CPAP because of the hospital not trying to wean her. Please help.” Oh, absolutely. This is a great question for Intensive Care at Home because we’ve had many newborns at home, premature babies that went home with a tracheostomy on CPAP, but also went home without a tracheostomy on CPAP and some of them actually got weaned off the tracheostomy and the CPAP or some of them got weaned off the CPAP.

Now, why did those kids need CPAP or tracheostomy? They were premature babies. Their lungs weren’t developed to the point where they could breathe independently. But that comes back over time from what we’ve learned with those kids at home. So really, you should contact us at Intensive Care at Home. I can see that you are in Australia from your email, and you should contact us. We can definitely help you taking your loved one home.

The NDIS (National Disability Insurance Scheme) funding will most likely fund nursing care and you should absolutely contact us. This is right up our alley. This is bread and butter for us. We have helped many toddlers to go home on a ventilator with a tracheostomy and actually help them wean off at home. Please contact us. I hope that answers your question here, Laura.

And then I’ve got one more question to go before I wrap this up today. If you have any other questions, please type them into the chat pad while I’m reading out my last question here and then I’m going to wrap this up for today.

This is an email from Ashley. Ashley says,

“I just wanted to start by thanking you. You have been an absolute invaluable resource for me over the past two months.

My sister who’s 35 had a cardiac arrest at home on Thanksgiving Day. She spent six weeks in ICU and is now left with pulmonary issues. She can’t be weaned off the ventilator. Much of this time has felt like the doctors at the hospital are the enemy due to me not agreeing with much of their “treatment.”

At one point, she was on 20 different medications. Almost every time I needed information, I would find an email from you that said exactly what I was needing at the time. I want to thank you for that.

If I may ask one question, she’s on a tracheostomy but doesn’t need ventilation anymore. It’s very apparent to me she doesn’t like the tracheostomy. She fought the ventilator the whole time. She keeps having coughing fits to the point they give her morphine.

My question is, can they get rid of the tracheostomy and use non-invasive oxygen if and when needed? Technically, she’s “vegetative” according to her doctors, but I disagree. She’s minimally conscious and is aware of what’s going on. She can breathe on her own as long as they don’t load her with opiates and can cough very well.

Once again, thank you for what you’re doing. You are an angel for sure.

From Ashley.”

Where do we start? It’s great that she doesn’t need ventilation anymore. That’s fantastic. And she doesn’t like the tracheostomy. Well, can she have the tracheostomy removed? Well, quite simple, she can have the tracheostomy removed if she can cough, if she can swallow, if she can protect her own airway. Those are the three main ingredients to have the tracheostomy removed. Again, let me repeat, cough, swallow, and protect her own airway. If she can talk, if she can speak with the speaking valve, that’s definitely a benefit. Those are the things that should be happening as a next step.

Now, as far as the morphine is confirmed, she’s having coughing fits. Look, I don’t know what that looks like. Does that mean they need to give her morphine to get her to stop coughing? I don’t know how to say from a distance. Bear in mind, morphine has as a side effect, respiratory depression, i.e., if she’s breathing spontaneously, the morphine may inhibit that. They should use the morphine very, very lightly.

The question is, why is she having the coughing fits? Is the tracheostomy very irritable? Does she need a different size tracheostomy. Is the tip of the tracheostomy leaning on to the tracheal wall and is causing coughing fits? Do they need to shorten the tracheostomy, for example? Best way forward is to remove it, of course. But again, if she’s not fully awake, if her Glasgow Coma Scale is minimized, she may not be able to protect her airway. She may not be able to swallow. I don’t know. You didn’t share any of that in this email.

And you are saying she’s minimally conscious and is aware of what’s going on. The question is she conscious of what’s going on to the point where she can cooperate without tracheostomy? Another question is how often does she need suctioning? Once a day? Once an hour? Once every half an hour? Those are all questions you need to ask. If she does need suction frequently, can she clear her airway without suctioning? And can they use something else to suppress the coughing fits?

Again, do they need to use medication or is it as simple as changing the size of the tracheostomy? And is it as simple as looking at whether the tip of the tracheostomy sitting at the end of the tracheal wall and is irritating the trachea and therefore, she coughs. We’ve had clients like this before or I’ve seen patients in ICU whether at home or in a hospital where the tip of the tracheostomy needs to be cut by a couple of inches or by a couple of centimeters. So, I hope that helps, Ashley.

So, I’m going to wrap this up for today. We’ve been going for nearly an hour. If you have any other questions, please type them in. If not, I am going to wrap this up in a minute.

Thank you so much for coming on to the call and for sending in your questions this week. But also thank you, Rosa, for participating live here and for your questions.

I will do another YouTube live next week, same time, Sunday morning, Melbourne, Sydney time, 10:30 AM which is Eastern Standard Time in the U.S., 6:30 PM on a Saturday, which is 3:30 PM Pacific time, and I look forward to seeing you then.

Now, if you have a loved one in intensive care, adult or a child and you want to go home, especially if you are in Australia, you should contact us. We can help get you home from intensive care, especially if you’re long-term ventilated with a tracheostomy and ventilator, or if you need home TPN, if you need BIPAP, CPAP at home, if you need seizure management at home, we can do all of that with Intensive Care at Home. Please contact us at intensivecareathome.com. Contact us on one of the numbers on the top of our website or send us an email to [email protected].

And if you have a loved one in intensive care and you need help just with questions answered with consulting advocacy, please 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].

Also, if you need a medical record review, we can help you with that as well. We review medical records for clients in intensive care or after intensive care. With Intensive Care at Home, we are also now providing specialist support coordination for our clients. So, if you are looking for a specialist, support coordinator for Intensive Care at Home, especially if you have a loved one in intensive care, please contact us as well.

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 intensive care and Intensive Care at Home related.

Now, if you like the video, give it a thumbs up, subscribe to my YouTube channel for regular updates for families in intensive care, and share the video with your friends and families, click the notification bell, and comment below what you want to see next, what other questions and insights you have.

I’ll see you during the week with my quick tip videos, and I’ll see you again next week with another YouTube live Your Questions Answered.

Thanks everyone.

Take care for now and I wish you and your families all the very best.

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 (National Disability Insurance Scheme), 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.