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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,
LIVING WITH VENTILATOR AND TRACHEOSTOMY AT HOME, SOME REAL-WORLD ADULT AND PEDIATRIC CASE STUDIES!
You can check out last week’s blog by clicking on the link below this video:
In today’s blog post, I want to answer a question from one of our clients and the question today is
How Long Can You Live on BiPAP/CPAP at Home? Live Stream!
Welcome to another Intensive Care at Home live stream.
Today’s topic is how long can you live on BiPAP or CPAP at home? It’s a question we get rather frequently, and I thought it’s time to do a live stream about it. So I can give you again some real world case studies.
So just a couple of housekeeping issues. If you have any questions regarding today’s topic, please type them into the chat pad. You can also dial in live into the show if you wanted to, after I go through the topic, then it’s time to answer questions. If you have any topics that are intensive care or Intensive Care at Home related, but not on today’s topic, I’m very happy to answer them as well, once I’ve gone through today’s topic, I will let you the phone numbers know at the end of today’s topic.
Now, before I dive into today’s topic, in case you wonder what makes me qualified to talk about today’s topic. I am an intensive care nurse by background. I have worked in intensive care over 20 years in three different countries. I was part of setting up Intensive Care at Home in Germany over 20 years ago, where we were the first provider pioneering, what was then a new model. I also started then eventually Intensive Care at Home here in Australia in 2012. And we are serving a large number of clients here in Melbourne, Sydney and Brisbane for Intensive Care at Home.
And we are employing intensive care nurses in the home. We are the only service in Australia, as far as I’m aware, that has third party accreditation to provide Intensive Care at Home service. We have built not only the quality manual, but also the accreditation and the intellectual property to provide such a service and take clients home from intensive care directly, keep them safe at home and provide them more importantly with quality of life. Some of you may also know me from Intensive Care Hotline, where we provide a consulting and advocacy service for families in intensive care. And you can find more information there at intensivecarehotline.com. Some of those live streams, like today, are about Intensive Care at Home.
And some of the live streams are about intensive care in general, but today let’s focus on the Intensive Care at Home topic. How long can you live on BiPAP/CPAP at home?
So the answer to that very question is really that it depends. We have some clients at home that have been at home on BiPAP or on CPAP for many years. And we had some clients at home that have been on BiPAP just for a few weeks or for a few months for palliative care. And those clients eventually passed away, even though they were at home BiPAP it was their desire to pass away at home. They didn’t want to go back in hospital. And we obviously facilitated that with 24-hour intensive care nurses at home. And just on that note, all of our nurses that work for us have a minimum of two years ICU experience or pediatric ICU experience. Most of them have completed a postgraduate critical care nursing qualification. The average nurse that works for us has probably between eight and 10 years, ICU or pediatric ICU experience.
We, as a matter of fact, employ hundreds of years of intensive care nursing experience that we send into the community. And that is something that I’m very proud of, but also something that’s unmatched, as far as I’m aware, in the industry, that anyone can send highly skilled, intensive care nurses into someone’s home and keep those patients or clients at home, instead of having them in an intensive care unit, that’s full of infections, that’s busy, that’s noisy. There’s still limitations around visiting hours because of COVID. I mean, I could go on about why Intensive Care at Home is the much better alternative compared to an intensive care unit, especially when it comes to long-term stay or long-term treatment on life support.
So looking at some case studies, our very first client, we actually took home on BiPAP, in the very early days of the inception of the service, was a three-year-old boy at the time. He was born with a very rare disability. And then he ended up having a cardiac arrest at the age of three. And he ended up with a hypoxic brain injury because obviously he had a period of time, for more than three minutes, where his brain had no oxygen and irreversible brain damage was caused. So eventually he spent like six to 12 months in the pediatric ICU before we could finally take him home on BiPAP ventilation. He also had seizures as part of his hypoxic brain injury. So he had a very unstable airway and was on BiPAP. Now eventually after about 12 months, he got weaned off the BiPAP because his condition had improved. He got more alert, his seizures were more controlled and also he eventually had a tonsillectomy and that enabled him to get off the BiPAP.
So that was our first client that we looked after at home on BiPAP. And then as time went on, we looked after many more clients and we still have, at the moment, probably about four or five clients on our books that have BiPAP or CPAP at home so one could argue, why do they need an intensive care nurse if they’re on CPAP or on BiPAP at home? Well, the reality is that if those clients were to go into hospital with their chronic conditions of, for example, cerebral palsy, motor neurone disease, muscular dystrophy, that gets them connected to the BiPAP almost 24 hours a day. If those clients were to go into hospital, if they wouldn’t have intensive care nurses at home 24 hours a day. If those clients would go to hospital, they would go into intensive care anyway, because the BiPAP or the CPAP couldn’t be managed on a hospital ward, because again, it’s an intensive care nursing skill or intensive care skill to look after those patients. Even though their chronic and long-term patients, it’s not a skill outside of intensive care that nurses have to look after patients on BiPAP.
Now, bear in mind, when someone is on BiPAP again, they have an unstable airway. They need to be assessed on a shift by shift basis in terms of air entry. Someone needs to listen to their chest. Someone needs to monitor their oxygen saturation regularly. Someone needs to monitor the volumes that are going in and going out. Someone needs to monitor whether the pressures are still appropriate for the clinical condition that we are dealing with.
So when someone is on BiPAP, for example, a common setting would be an IPAP (inspiratory positive airway pressure) of 16 and an EPAP (expiratory positive airway pressure) of maybe 10 or 8. That means on inspiration. The pressure is 16 centimeters of water and on expiration, it’s 8 centimeters of water. Now that’s fairly high pressure that go into the lungs, especially if there’s secretion build up. If there’s an infection, there’s a risk, for example, for a pneumothorax or a barotrauma, that all needs to be monitored. Now, while the risk is reasonably low, it needs to be picked up on very quickly.
That’s one of the many reasons why someone needs an intensive care nurse 24 hours a day when they’re on BiPAP. On top of that, most of our clients, again with cerebral palsy, not so much with muscular dystrophy, but especially with cerebral palsy that are BiPAP dependent. They also have seizures that need to be managed. So the risk of seizure management and BiPAP is a big, big risk for again, aspiration. When someone is seizing, they’re often having vomits as part of that, especially if they’re tonic-clonic or grand mal seizures, they are at high aspiration risk. Therefore an unstable airway and the aspiration risk needs to be managed by someone who knows how to do a deep suction.
Now, when you look at skills such as a deep suction, you might need to use a nasopharyngeal airway. You might need to use a Guedel airway. And again, those are tools and those are skills that only intensive care nurses or emergency nurses have. So that is one of the many reasons why there needs to be an intensive care nurse 24-hours a day. Some of our clients, not all of those clients, but again, when it comes to long-term BiPAP and aspiration risk, they might have a fundoplication. For those of you that haven’t heard of a fundoplication, it’s basically a narrowing at the connection between the stomach and the esophagus. It’s a narrowing of that entry, so that aspiration is less likely, because there’s less reflux.
Also, when someone is on BiPAP, the pressures that go into the lungs are enormous. I just talked about as an example, 16 inspiratory support and 8 expiratory pressures. We have a client, I believe he’s on 24 over 16. Now that’s massive. Now this client, this particular client, does have a fundoplication, which means his aspiration risk is already diminished. But, it’s not eliminated altogether, it’s just minimized. And especially with such high pressures going in. Again, the risk of barotrauma of a pneumothorax is real and it needs to be monitored constantly. The volumes need to be monitored. Again, chest auscultation with the stethoscope needs to happen quite frequently, making sure that air is going in properly. Oxygen saturation needs to be monitored all the time. And that is simply nothing that can be done by lay people, or even by general registered nurses who haven’t worked in intensive care.
Anything that’s related to BiPAP/CPAP ventilation needs to be managed by intensive care nurses, with the exception, and we’re not going to talk about this today, of sleep apnea. Especially if people are otherwise healthy, and they just need a little bit of CPAP overnight because they’ve got sleep apnea. But in our situation, our clients are not suffering from sleep apnea. If they do suffer from sleep apnea, that’s probably one of the least of their concerns. They have much bigger issues to deal with. Other clients that can be looked after at home on BiPAP and CPAP is of course, COPD (chronic obstructive pulmonary disease) or asthma clients. They often need the BiPAP or the CPAP to keep CO2 (carbon dioxide) levels down. That’s pretty much the case for all of our clients, manage CO2 levels, carbon dioxide levels, as well as PO2 or oxygen levels. That’s often the whole purpose of the BiPAP.
I’ll give you another example. Again, that was a client from one of our earlier days, that was a C4 spinal injury client. She was on BiPAP. What happens is if people are not getting the BiPAP regularly, their CO2 goes up. And if their CO2 goes up, they become confused. Now, when patients are confused or clients are confused and they’re becoming non-compliant, they may not take their medication. They may not eat. They may not drink. They may become incontinent. There’s all sorts of issues coming by people not being compliant with the BiPAP or the CPAP at home. And again, if you’re working with professionals, like we do, we ensure that compliance is there. And we explain obviously to people why the BiPAP is necessary or the CPAP is necessary. And it just gets clients to experience a much better quality of life.
Again, another example is we have a client where we do night shifts only. This client actually has dementia. She doesn’t need the CPAP during the day, but if she’s not on the CPAP overnight, again, her CO2 rises and she would be even more confused during the day. There are falls risks. Massive falls risks, and that gets people into hospital anyway. Part of the whole idea about our service is really to keep people out of ICU, offload the hospital system, making sure that an already stretched hospital system doesn’t get more overloaded.
Now, also, where’s the evidence for all that I’m telling you? So some of the evidence you will find in the mechanical home ventilation guidelines that we publish on our website, I will put a link below this video once it’s published for everyone to watch.
So when you look at the mechanical home ventilation guidelines, again, there are guidelines from over nearly 25 years of intensive home care nursing out of Germany, and now also out of Australia. And those are evidence-based mechanical home ventilation guidelines. And those guidelines clearly say that the only way it’s safe to take someone home from intensive care on BiPAP, CPAP, and tracheostomy, even on noninvasive ventilation needs an intensive care nurses 24-hours a day. Again, the whole idea is to keep patients at home predictably. We know of many services. They work with lay people and their clients bounce back into ICU all the time. Or even worse, they might be passing away. We have enough evidence to confirm the claims that I’m making here.
I’ll give you another example, so one of our clients is at home on a tracheostomy with ventilation. He’s got motor neurone disease. So before he ended up with a tracheostomy at home, he was at home on BiPAP. And that brings me right back to the aspiration risk. So when he was at home on BiPAP, he had no nursing support. The work was done mainly by the family. And he ended up with an aspiration pneumonia. That aspiration pneumonia got him into ICU. In ICU, he got ventilated with a breathing tube and he couldn’t be weaned off the ventilator. And then he ended up with a tracheostomy and that’s when we started working with a client and we took him home within four weeks. Please keep in mind that the aspiration pneumonia might have been avoided, if an intensive care nurse had been there to begin with when he was on BiPAP.
So it’s also about prevention. It’s not only about cure. It’s about prevention as well. The last thing someone on BiPAP needs is an aspiration pneumonia. That is the last thing that someone needs. But to come back to the original question, how long can you live on BiPAP or CPAP at home? It’s really a case of how long can BiPAP or CPAP be tolerated. For example, is the next step needing a tracheostomy, because BiPAP can no longer be tolerated?
So I’ll give you an example. And whilst it’s a little bit left field, you will get the idea. So this morning, I was actually talking to a client who has their 74-year-old mom in ICU, on BiPAP with COVID pneumonia. She actually sent me a picture. She’s on a hundred percent of oxygen on the BiPAP. She’s on IPAP of 16 and EPAP of 12, with a rate of 20 breaths per minute.
So the hospital is telling her that she can no longer tolerate the BiPAP, they’re already maximizing the support, a hundred percent of oxygen. You can’t go any higher than a hundred percent. So they’re now telling her she’s either going over to intubation, or she may not survive the episode. So in this situation, we did recommend that they should intubate her, assuming that they want everything to be done. That was our recommendation in the context of we assume that her mother would want everything done.
But anyway, so the same could happen in a home care scenario where someone can no longer tolerate the BiPAP. It’s too tiring for them. The support demand is going up. Oxygen is going up. Oxygen demand is going up. Pressures are going up. Maybe tidal volumes are dropping down, because there might be resistance. There might be infection or whatever. That’s when you would go on to a breathing tube and potentially a tracheostomy. And then you have more options of managing the ventilation at home in particular.
So in terms of again, life expectancy, some of our clients have lived at home for many years on BiPAP. But again, we’ve also had some palliative care situations at home where patients go home on BiPAP and they want to have palliative care at home. They do not want to have palliative care in ICU. Of course, that’s when they engage our service. Also, what we’ve done over the years is we’ve taken patients home that had a “one-way extubation” in ICU. They went home on BiPAP to have some quality time with their families. And then the BiPAP was removed and palliative care was started, and nature was taking its course on those patients. But again, this is very rewarding work because patients can at least pass away in an environment where they want to be. The end of life situation, it’s not dictated by the hospitals. It’s just something that families have opted for. And that can be facilitated by our service, Intensive Care at Home.
If I keep coming back to this example from a minute ago, where I said one of our motor neurone disease clients had an aspiration pneumonia while he was on BiPAP at home. Just to give you another example there, we are currently working with another client. He’s a muscular dystrophy client, and he was looked after 24-hours a day by support workers on BiPAP. And again, he had an aspiration pneumonia that got him into ICU, and he’s now confined to an ICU bed since the last six months.
Again, I believe this is something that could be prevented with our service, Intensive Care at Home, because it’s a higher level service. Once again, nobody at home on BiPAP or on CPAP should be looked after by support workers, by general registered nurses, or by families, because they simply lacking the skills and the expertise to do so. And again, what I’m saying here is evidence-based. If you’re going back to the mechanical home ventilation guidelines that are evidence-based, it’s clearly saying there that only intensive care nurses 24-hours a day can look after patients at home on mechanical ventilation, invasively or noninvasively.
Now another question we’re getting quite frequently, I gave you this example a minute ago, where I mentioned that I was talking to a client this morning, has their mother in intensive care. And after COVID she’s on a hundred percent of oxygen now, on the BiPAP mask and we’re getting a lot of questions there, how long can someone live on BiPAP in ICU? And I think it ties right in with this question. As long as they are BiPAP tolerant, they can live with BiPAP for a long time to come. But again, it also depends on what’s the underlying issue. In a COVID situation where if COVID is getting worse, the only option really is to intubate.
And there are some situation maybe for patients with COPD asthma, where they don’t need intubation. As long as they are CPAP or BiPAP tolerant, they can live on it for a very long time. And again, if your loved one, is in a situation like that in ICU, that’s when you should contact us. So we can help you taking your loved one home. Now there is a distinction that I need to make.
Again, we have many inquiries where someone goes into ICU just for a couple of days of BiPAP, it’s a new situation. They’ve never been on BiPAP before. And then we have people contacting us. Can you help us take our loved one home on BiPAP now? And we say, well, technically we could. But the question always is, how quickly can they come off the BiPAP? Because if they stayed in ICU for another week and they can come off the BiPAP, it’s no point really to start looking into Intensive Care at Home. Because if they get off the ventilator, then it’s so much easier to keep them in ICU for another week, and then get them to a ward and then get them home because it’s so much easier to take them home without a ventilator.
So that’s a situation for patients in ICU, where we can 100% help you get your loved one home if they can’t be liberated off the BiPAP and also if intubation is not needed. Now, when someone is in hospital and you want to go home on BiPAP, they often need to have a sleep study to see what their breathing pattern is, with arterial blood gases and then you can adjust the ventilator, and then you can take them home.
So that’s how that, generally speaking, works in terms of transitioning home. If you are in Australia, again, you should contact us at the NDIS (National Disability Insurance Scheme) is funding most of our services, but also organizations such as the TAC, the Transport and Accident Commission in Victoria, or iCare in New South Wales or the DVA, Department of Veteran Affairs. That brings me to another client that we looked after at home on BiPAP. Again, a fairly young man at the time, with regular seizures. And again, needed 24-hour intensive care nurses because he was on the BiPAP, had regular seizures, he was desaturating very quickly had an unstable airway regularly.
And another client that we are going to start soon is a client that has end stage lung cancer, is on the BiPAP 24-hours a day. Again, doesn’t want to go back to ICU and that’s where we can help with managing the BiPAP, managing all the pain medications and managing just the overall care of such a complex client. Again, if you’re finding yourself in a situation like that, you should definitely contact us. We can help you send you nurses. And if you’re worried about funding, you should also contact us. We can point you in the right direction, how to get funding, whether it’s again, through the TAC, the DVA or the NDIS in particular, you should contact us.
Okay. So that’s giving you an overview. If that makes sense. Now, what questions do you have? I know Traca just asked a question. Oh, “Thanks for all your help.” It’s a pleasure. It’s a pleasure Traca. I hope that things are improving for you and your family. And it’s nice to see you here.
Now, if you are an NDIS participant or you have a family member, that’s an NDIS participant. Again, you should definitely contact us. If you have a loved one on by BiPAP, whatever the underlying disabilities. And you should not be put off by the rhetoric that you hear potentially from NDIS support coordinators from the NDIS that there won’t be any funding, that is not the case. We wouldn’t be in business if the NDIS wasn’t funding. And if I would say, was not accurate. So you should definitely contact us.
And if you’re in the U.S., you should contact us as well. We can hopefully point you in the right direction, what to do next. We are engaging with a couple of service providers in the U.S. at the moment, but we can also guide you around what to do when you’re in ICU. You should absolutely contact us either at Intensive Care at Home on one of the numbers on the top of our website or at intensivecarehotline.com and contact us there as well. On one of the numbers on the website.
Traca, you’re saying your dad pulled his tracheostomy out all the way during the night. “They were able to get it in timely, but they can’t tell us if they used the same trach or a new one. What should we do?” Traca, I would be very surprised if they used the same one. Once it’s out, it’s deemed unsterile, it’s deemed dirty. So I would be very surprised if they put in the old one. They should have spare tracheostomies at the bedside, which means a skilled nurse would just pull out a new tracheostomy and would put it back in. Would hopefully do it sterile. And there’s no need to do anything else really, besides possibly doing a chest x-ray, just making sure it’s all in place. I would ask. Have they used a new one? Have they done a chest x-ray? Those are probably the two most important questions.
Now you’re saying they had to take him off air mist after 48 hours, and now back on CPAP is this common? And he’s been very sleepy and out of it all day. Great question. So what I can see there is when you say he pulled out the trach, I hope they recognize it pretty quickly. Some of it might depend on how long was he without a trach, is that why he’s potentially out of it? So you would hope that they would’ve picked up on it pretty quickly and that they would’ve done all the right things within minutes, but those might be your next question. How long did it take them to (A), find out he pulled out the tracheostomy. (B), how long did it take them to put it back in?
If he’s now back on CPAP, it might be a sign he had the trach out for a little longer than they want to admit, because he might be simply exhausted. The other thing that might have happened, and again, I’m speculating here a little bit. The other thing that has happened is maybe they’ve given him sedation when they reinserted the tracheostomy. If they’ve given him some sedation that maybe one of the reasons why he’s now back on CPAP. And again, if he’s been very sleepy, what I said before, for example, I mentioned carbon dioxide. If he had the trach out for too long, maybe his carbon dioxide went up and that’s why he’s sleepy. Maybe a blood gas might be something they would want to look into.
So you’re saying that they did a CT scan of the brain you’re waiting for results, right? So why would they do a CT scan of the brain? I tell you why they probably would. Probably would do that because they are worried that the trach was out for too long, and that they didn’t put it back in quick enough. And they worried that there might have been some hypoxic injury or hypoxic episode. That’s my explanation, from a distance with the information that you’ve given me, there could be other things as well, of course. So that’s very incomplete. “They’ve given him Zyprexa 2.5 for agitation last night.” Was that before or after he removed the trach? Was the Zyprexa are given before after the trach removal?
And this happened in a hospital, obviously. These are also the reasons why at home, again, keep coming back to the mechanical home ventilation guidelines. While at home, our clients need an intensive care nurse, 24-hours a day, because things like that happen. Patients might remove the tracheostomy, and then you need to know what to do in an instant. That’s a perfect example. So if this happens in a hospital, this can happen at home. So they’ve given him the Zyprexa after Traca. Okay? So if they’ve given him the Zyprexa after the tracheostomy removal, that probably means he was very agitated to begin with.
And now the question is, “Has that Zyprexa made him too sleepy and is that why he’s gone on CPAP?” Hard to say, but it might be one of the reasons. Having said that, Zyprexa 2.5 it’s not a lot, but it also can kick in very quickly. And if it kicks in very quickly, it can knock people out. It can have a knockout effect. Having said that it’s also short acting, so people might come out of it reasonably quickly as well. That’s my experience there.
Now, if anyone else has any questions, please type them into the chat pad now. Also, if you want to dial into the show and want to ask questions on the show, I’ll give you the numbers now if you’re in Australia, call 0410942230. That’s again, for our Australian viewers, 0410942230. For our American viewers or Canada, 415 915 0090. That’s again, 415 915 0090. And for our UK viewers, 0118 324 3018. UK, 0118 324 3018.
So other questions that have come through, Traca says, “He’s very sensitive to any meds.” Yeah, I’m sure he is. I’m sure he is. Anyone in ICU is incredibly sensitive to any changes. It doesn’t take much to upset the status quo in ICU. Patients are incredibly sensitive.
Helene. Nice to see you again, you are asking, “Can excessive use of BiPAP cause a pneumothorax air around the lungs. If not, what are the causes for this condition?” Yeah, absolutely, Helene. I don’t know whether you were here from the beginning. This is something that I mentioned in the beginning, that I wouldn’t say it’s so much the excessive use of BiPAP that can cause a pneumothorax, but the use of BiPAP can 100% cause a pneumothorax.
So for example, what I mentioned in the beginning is that if patients are not managed with intensive care nurses or with highly skilled nurses, and they’re not picking up on secretions on the lungs, for example, if someone is on BiPAP and the nurse has a listen with a stethoscope to the lungs. And for example, there’s no air entry on the left, but there’s air entry on the right. You got to wonder what’s happening. Is there a pneumothorax, for example? That needs to be picked up on very quickly. So the risk for someone on BiPAP to sustain a pneumothorax is very high, because the pressures that go into the lungs are very high. So it’s as simple as that.
Now, Traca you’re asking, can a nasogastric tube be used on CPAP? Yes, absolutely. There’s no reason why nasogastric tube can’t be used on CPAP or on BiPAP.
Helene, you’re asking, what if not, what are the causes for this condition? Can excessive use of BiPAP cause a pneumothorax? The answer is yes. I hope that answers your question there, Helene.
Now, then we’ve got T.i.S here, “Hi Patrik, I hope you’re well it’s Leeroy, Leonie’s nephew.” I remember the name. Leonie’s’ nephew. “Mom has done a recent blood gas…” Leeroy, Leonie’s nephew. I remember the name. I can’t quite point my finger to it now. Anyway, “Mom has done a recent blood gas and her PO2 is 7.6, and her PCO2 is 8.04, and her PH is 7.372. Also SPO2 is around 88 and above. Her finger reading shows mid 90 saturation.”
Those are not great numbers, T.i.S. Those are not great numbers. Yeah, that those are not great numbers at T.i.S. 88 of saturation is pretty poor, PCO2 of 8.04 is too high, PO2 of 7.6 is too low. So you got to give me more information to look for remedy.
Now Traca, you’re saying, “They have him unhooked all day because he’s on CPAP, what they told us. I follow through on that. I know he’s albumin is 2.5.” Albumin is very low, he probably needs an albumin infusion. When you say they have him unhooked all day, what do you mean by that?
Leonie’s nephew. T.i.S. Are you in London? I’m just trying to think, who’s Leeroy. I think I do remember Leeroy. I think I was talking to the family there earlier in the year, but I can’t have to look through my list of names.
So Traca, what are you saying when you mean they have him unhooked all day? I don’t know what you mean by that.
“I’m from Bristol.” Yes, yes, yes. Leeroy.Yes, I think I remember speaking to Leeroy’s mom. Yeah. Okay, great. Yeah. You’re in the UK. Yes, I remember now. Well, that’s in the middle of the night for you. Thank you for coming onto the call. I know it’s like 2:00 AM for you or something like that. That’s great.
Traca says, “They stopped feeding him. He was eating puree last couple of days with night feedings.” So basically overnight, they put him back on the nasogastric or the PEG feeds, Traca. Why did they stop feeding him? What stops them from feeding him Traca?
Anyway, Traca, if you can get back to me.
“They said CPAP.” Okay. But why did they stop feeding him Traca? What’s the reason for that? The CPAP stops them from feeding him? It may stop them from feeding him, because like I explained in the beginning, there’s an aspiration risk. And you’re saying he was too sleepy to eat today, the puree. Right. Okay. Fair enough. Yeah, if he’s too sleepy, the risk of him aspirating is too high.
So then Helene asks, “When a patient with ARDS is on BiPAP, is it okay to receive IV fluids? What are the dangers of excessive fluid overload on BiPAP?” Great question, Helene. So many patients, especially during COVID went on BiPAP to begin with ARDS (acute respiratory distress syndrome). That was the first line treatment, that often failed or not failed it wasn’t enough. So they had to be intubated. “Did they receive IV fluids?” 100%, they did receive IV fluids. The challenge for any ventilated patient in ICU, in particular, in the acute phases, you don’t want to fluid overload them. If you do fluid overload them, the first organ that would be impacted is the lungs. So therefore you need to keep the lungs dry. So that’s why in ICU, but also at home, what we do with Intensive Care at Home, we maintain very strict fluid balances and we measure fluid balances. And that’s what we do.
What are the dangers of excessive fluid overloaded on the BiPAP? Well, the danger is simply that the next step is intubation. That’s the danger with fluid overload on BiPAP. Again, someone on a ventilator, the last thing you want is for them to become fluid overloaded. That’s the last thing you want.
Okay, Wendy. Nice to see you again. I think you’ve been here before as well. “My mom just got off the ventilator Monday for the second time in a month and a half time. She has a one-sided paralyzed diaphragm and a CO2 levels get in the 90s and they have to ventilate. Well, they are wanting to send her home Monday with hospice. They say they can’t do anymore for her. She’s only 62.” Wendy, why is your mom on the ventilator in the first place? Does she have a tracheostomy? That would be my first question. If you can answer that, that would be great.
T.I.S, “Mom had lung failure and we advocated for her. We also spoke on WhatsApp in meetings and now she’s at home..” Okay. Yes, of course. Now I know who you are, Leeroy. Yes, yes, yes, yes, yes, of course. Now I know who you are. Your auntie is Leonie. Yes. Okay. With you now. Sorry about that, “Mom had a lung failure and we advocated where we also spoke with WhatsApp in meetings,” yes, yes, “now she is at home with NIV.” Now I need to go back to some of your other questions because now I know who you are, now I remember your moms situation. Yes. Leeroy, Leonie’s nephew, “Mom has done a recent blood test and her PO2 is 7.6 and PCO2 is 8.”
Okay, yes. Lerroy, did she have a sleep study as part of that? Now I’m piecing together the puzzle. Do you know whether she had a sleep study as part of the arterial blood test?
Okay. So now Traca, oh, hang on. Before I come back to Traca. Leeroy, you’re saying, “She has an oxygen concentrator of 60 that’s when she relaxed and she has to be switched to 8 liters when moving around. And yes, that’s right.” Yes. But with the blood gas, Leeroy, did you have a sleep study in hospital? Do you know?
Okay. Traca, you’re saying, “Now dad has a huge edema purging out of his left side of the stomach. They are giving Lasix only has physical therapy one time in seven days. LTAC is horrible. Have to be on top of them.” Yes. I know. I know. Purging out of his left side of the stomach. They’re giving Lasix only… Yeah. Problem with your dad Traca, they’re not doing what they’re supposed to be doing. We know that LTACs are horrible.
Okay. Wendy you’re saying, “Her CO2 was too high, but she has refused the permanent trach. She also has issues keeping the BiPAP mask on and my dad has a hard time keeping it on. She’s also on constant oxygen. She also has AFIB and congestive heart failure on top of it all.” So Wendy, what you’re saying is your mom doesn’t have a trach and she doesn’t have a breathing tube. So your mom is ventilated with a BiPAP mask. Is that what you’re saying?
Okay, Helene can BiPAP machine cause collapse of the lungs? No, I’d say not so much. One, if anything, it reverses the collapse of the lungs. So if you’ve heard of the term atelectasis, right? Atelectasis is a collapse of the lung alveoli and if anything, the BiPAP opens up those collapsed parts of the lungs, it opens up the alveoli. I hope that answers your question.
So Wendy, really, I need to find out from you whether your mom has a breathing tube or whether she’s just on BiPAP because it all depends on that. Because if they want to send her to hospice and she doesn’t have a breathing tube, if you want her to continue treatment, she needs to be intubated most likely. And then you can see whether she’s improving or not. And then you can take the next steps.
Thank you for all your questions. Keep them coming. Seems like we’re on a roll.
Leeroy, really need to know whether she had a sleep study with all of that. And what did they say? What was the outcome from the blood gas? What did they change because of it?
Wendy’s saying, “That is correct. Her first time on the vent was for 11 days. And this second I was eight days. Just BiPAP right now. She doesn’t want to go to a long term facility. Wendy, being intubated doesn’t mean she’ll be going to an LTAC. Okay? But what you need as a starting point, you need her to be intubated, to avoid hospice. If that’s what you want, if that’s what she wants. I can’t tell you what is right for your mom. Only you and your mom can determine that. But you need to know about the options.
The options are intubation, potentially a trach, but get her intubated first and see whether she can improve from there. That’s the best that I can recommend for you now. And in your first message, you’re saying Wendy, that, “She got off the vent for the second time in a month and a half.” Yes, very important, Wendy. If her diaphragm is paralyzed, ask them, have they considered a diaphragm pacer.
Some patients even with a C1, C2 spinal injury, they have a diaphragm pacer. And that can actually initiate some breaths. Ask them that very question, have they considered a diaphragm pacer? It sounds to me like as part of the stroke that her diaphragm is paralyzed, at least part of it. So ask them have they considered a diaphragm pacer? It requires surgery, but it could resolve some of the issues there. We have looked after clients at home with diaphragm pacing. If they have a C1 or a C2 spinal injury. It is an invasive surgery. But I think it’s minimally invasive. Ask them that very question.
Okay. Keep the questions going. I have about another 10 minutes before I need to wrap this up.
“I believe her heart issues are keeping them from doing any surgeries right now,” that’s what Wendy says. Look, you got to ask the questions. Do you know if she’s on any inotropes or vasopressors? Wendy, do you know that? But even so you should be asking, regardless.
Helene, “Is 72 hours straight, too long for a patient to be denied, food, water, or break from the BiPAP?” That’s a great question, Helene. There are situations where I’ve looked after patients in ICU, that have been on high levels of BiPAP, and you could barely take them off because they just couldn’t cope. But for whatever reason, you wanted to keep them off intubation. And the reason we wanted to keep them off intubation was simply that we thought that we had reason to believe that if we intubated the patient, they would not survive. So then the question came, do we need to keep them off food, water, to minimize the aspiration risk and keep them on the BiPAP and not intubate them?
It’s a very difficult question to ask. And it’s unethical question, if anything, but in those situations we had to weigh up. Okay, what’s the risk versus benefit? Do you want to deny people, food and water, but do you keep them alive and then deal with food and water down the line? It’s a difficult question. But yes, I have seen those situations and it would’ve been 48, 72 hours. I hope that helps Helene.
Now Wendy says your mom is not on inotropes or vasopressors. I will certainly ask them though. “Thank you for your time.” Sure. Ask them about the surgery.
Traca, “My dad’s CO2 was also elevated. I heard last night, but better today. Want to say 31.” 31 is good for CO2. Probably, if CO2 was up, they put him on the CPAP. The CPAP probably brought the CO2 down.
Leeroy, “What happens in her sleep study? She had an appointment with the Dream Clinic around June.” So what happens in a sleep study is the sleep pattern of a patient will be assessed, during sleep study. They’re hooked up to monitoring. And then out of that sleep study might come… They’re doing blood gases during sleep study, and then they might adjust the BiPAP. So my question is, as part of the arterial blood gas and potentially a sleep study, did they adjust the BiPAP settings? I would almost say yes, but that’s the question that you need to ask.
“And she has had this blood gas about a week ago.” So I’m actually wondering, did you have a sleep study in June? Did she then have an adjustment of the BiPAP between June and now? And did she now have another follow up blood gas? That’s what I’m wondering Leeroy. “Maybe they’ve done this because there were concerns about her carbon dioxide because she was getting headaches and falling asleep, but she does like her late nights watching Netflix series.” Yes, that’s probably exactly what’s happened. Her CO2 was going up. She was getting tired. She was getting drowsy. They did a sleep study. They did an arterial blood gas. They readjusted the BiPAP settings, and now they probably did a follow-up blood gas to make sure it’s working.
That’s my theory. Ask your mom, ask your auntie whether that’s what’s happened. “And they have a memory card attached to NIV machine.” Yeah, most NIV machines now have a memory card just to keep track on the parameters.
Right. So you see Leeroy, there you go. So, that’s great.
Okay. Right. “That’s exactly what’s happened.” Okay, great. That’s good to hear. That’s good to confirm.
And if I may just say Leeroy, just for everyone that’s on this video, I think your mom was the prime example where the ICU wanted to give up. They literally wanted to kill her and we stepped in with some advocacy and your family was great and we turned it around. It was a real success story by getting your mom out of ICU, by getting her home. And how many times have you heard from the ICU team, she was dying and she won’t have any quality of life. And there you go. Six months later, she’s at home. And yes, there are issues, but she’s at home and she’s alive. That was a great, great story with your mom.
Helene, “Are handcuffs restraints, mandatory or optional for a patient on BiPAP? Who makes that decision?” Great question. Helene, I think it very much depends on state legislation. I believe you’re in Florida from memory. It probably depends on state legislation. It’s different. I know in the UK, for example, restraints are forbidden. Here in Australia, they can be used. Really depends on the jurisdiction. I can’t answer that question. You have to find out what’s happening on a state level.
Oh, Georgia. You got to find out what’s happening on a state level. I wouldn’t know. There are different rules in different jurisdictions.
Now slowly wanting to wrap this up, but keep your questions going in the meantime, I will be going again live next Sunday morning, 10:30 AM Sydney, Melbourne time, which is 8:30 PM Eastern Standard Time in the U.S. Same time again, next week, Saturday, U.S. time, 8:30 PM, Pacific Time, 5:30 PM on a Saturday, 10:30 AM, Sydney, Melbourne time. And I believe that’s 1:30 or half past midnight in the UK.
Now we have more questions.
Wendy says, “They have used restraints on my mom. We were in Georgia.” Now Wendy and Helene, just because they were using restraints doesn’t necessarily mean it’s legal, okay? I just put that in there just because they use it doesn’t mean it’s legal. You just got to check what’s in your state.
Well, thanks Leeroy, for acknowledging that. It was absolute delight working with you and your family at the time.
Helene, “How often should blood gases be tested on BiPAP?” Great question probably depends on how acute a patient is. So as an example this morning, when I was talking to this lady who has their mom on BiPAP on a hundred percent of oxygen in ICU with COVID pneumonia. I would think that in a situation like that, they would be doing 3, 4, 5 blood gases a day, potentially even more. If someone is stable and they’re using the same settings over a period of time, it’s probably enough to do one blood gas a day. Now with our clients at home, we don’t do blood gases, but bear in mind they’re chronic clients. And they’ve been on BiPAP for a long time. They might do a sleep study once a year. And that’s when they do the blood gas. So in hospital, if patients are unstable 100%, you need to do it very regularly, but it really depends on how stable or unstable a patient is.
Now, Wendy, “I know they said they did not like using them. They have a sitter in the hospital room with her now to make sure she keeps the BiPAP mask on.” That is the preferred option, Wendy. And if they are now using a sitter, I’m almost bound to say it’s not legal to use restraints. Otherwise, they wouldn’t be using a sitter. That’s my theory there, but I could be wrong. I don’t know the ins and outs of state laws in Georgia.
Yes. So Leeroy, great to see you again here.
Okay. So we’ll do another live stream next week around the same time. Still have a couple of minutes left. If you have any other questions, keep them typing in here and I will get to them. I haven’t decided yet what the live stream next week will be, but it’ll be a topic that will be of interest for everyone. Again, watch out for the topic when I announce it later in the week. If you have any suggestions for a topic, please just shoot me an email to [email protected], and I will work with topics that you are interested in as well. Most of the topics that I am selecting are questions that we’re getting quite frequently. But if you have any topic that you think we haven’t addressed here, please just keep them coming.
Now I also, obviously, if you have a loved one in intensive care and you want to go home, go to intensivecareathome.com. If you’re in Australia in particular, we are servicing Brisbane, Sydney, Melbourne, Adelaide, Perth. Please contact us also if you need funding.
If you’re in the U.S., contact us as well. If you have a loved one in intensive care and you need consulting and advocacy 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]. And if you need help for Intensive Care at Home, send us an email to [email protected]. Also check out our membership for families in intensive care at intensivecaresupport.org.
If you need a review for medical records, we can help you with that as well, while you are in ICU, if you have a loved one in ICU. We can help you reviewing medical records while your loved one is in ICU, but also outside of ICU, again, contact us for that.
Now Helene has another question. She says, “If a patient is no longer under carbon dioxide duress, is there any reason to keep a patient on BiPAP?” Yes. So whilst BiPAP is very good to bring CO2 down. For example, again, probably coming back to the lady that I spoke to this morning that has their mother in ICU on BiPAP for COVID. We checked the blood gases. The CO2 was actually pretty good, but the PO2 was pretty crappy, which is also then another sign that she probably needs to be intubated. Most CO2 issues can be managed on the BiPAP, but PO2 issues may not necessarily be managed on the BiPAP, if that makes sense.
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If there are no other questions I’d like to wrap this up and I really want to thank you for coming onto the show. Tell everyone about Intensive Care at Home and Intensive Care Hotline. And I will talk to you next week.
Thank you so much. 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.
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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.