Podcast: Play in new window | Download
A Blue Print for Hospital Discharge with Tracheostomy with INTENSIVE CARE AT HOME!
Good morning, good afternoon, good evening, wherever you are. Thank you so much for coming on to another Intensive Care at Home live stream.
Today, I want to talk about, “The blueprint for hospital discharge with tracheostomy with Intensive Care at Home.” This is also hospital or ICU discharge. Sometimes tracheostomy patients go home from ICU directly. Sometimes they go home from respiratory wards, but I’ll break all of that down a bit later.
I want to welcome you for joining me on this call. I also want to welcome you if you’re watching this on replay. I do these YouTube lives usually once a week, usually at 10:30 A.M. on a Sunday Sydney Melbourne time, which currently is 7:30 P.M. Eastern Standard Time on a Saturday night, which is 4:30 P.M. Pacific time, but the times will vary slightly depending on whether the North America is in daylight saving or we are in daylight saving, but you get the right times through my email if you are on my email subscriber list.
In any case, before we go into today’s topic, what makes me qualified to talk about, “The blueprint for hospital and ICU discharges with tracheostomy with Intensive Care at Home” I’m a critical care nurse by background. I have worked in critical care/intensive care for nearly 25 years in three different countries where I have worked as a nurse manager for over 5 years. I have worked with Intensive Care at Home early on in my nursing career in the late 1990s and early 2000s in Germany. I’m also the founder and managing director of Intensive Care at Home here in Melbourne, Australia since 2012. We’ve been successfully operating Intensive Care at Home in the community since 2012 in Sydney, Melbourne, Brisbane, but also in regional and rural areas, Victoria, New South Wales, Queensland, and we’ve been hugely successful there. We are employing hundreds of years of intensive care nursing experience in the community, which is unheard of, unmatched by any other provider.
We are the only service provider in English-speaking countries as far as I’m aware, who has achieved third-party accreditation for Intensive Care at Home nursing. We have built unique intellectual property in this space making seamless transitions from intensive care to an Intensive Care at Home environment.
I’m also a consultant and advocate for families in intensive care and you can get more information at intensivecarehotline.com where we help thousands of families over the years of critically ill patients in Intensive care all over the world. You can get more information at intensivecarehotline.com.
Now, before we go into today’s topic, also want to acknowledge our viewers here. Feel free to type your questions into the chat pad. I can also bring you on later after I’ve gone through what I want to talk about today. I can bring you on the show later so you can talk to me directly. In the meantime, type your questions into the chat pad, ideally keep them to today’s topic. Once we’ve gone through today’s topic, feel free to ask any other questions.
Leo, I can see you’re here, “Hi, Patrik. Just find the wish you a happy and holy Easter. Thank you for your compassion and guidance.” Nice to see you again, Leo. I hope things are going well and are improving on your end. As you’re probably aware, I did speak to your brother this week, so hopefully your dad will be back home very soon.
Without further ado, let’s go into today’s topic. So, a blueprint for hospital and ICU discharges for patients with tracheostomy, I should say adults and children, we’ve done both and we are doing both. So, why is it important to talk about tracheostomy discharges? You’ve heard me speaking extensively about tracheostomy ventilation discharges from ICU home.
Why do I today want to talk about tracheostomy specifically? I tell you why I want to talk about tracheostomy discharges specifically without ICU, without ventilation simply because there are a lot of patients in hospital, either in ICU or in hospital wards, hospital floors that are sitting there with a tracheostomy and hospitals really don’t know what to do, or they want to send them home with insufficient support and that’s dangerous and it has cost lives or they want to send them home “training” family members.
Well, let me be very clear here, looking after tracheostomy is an intensive care nursing skill. It’s nothing else but an intensive care nursing skill. The reason for that is once you’ve worked in ICU for a while, it’s inevitable to look after patients with a tracheostomy and you get in ICU, you get all the specialist training, and it takes years to master intensive care. It takes years of practice when it comes to patients with a tracheostomy. So by then sending patients to a hospital ward, for example, a hospital floor, which is often the next step, you will see that those patients are being moved close to the nurse’s desk because no one can look after them and they need to be close to the nursing staff because they don’t have the ICU nursing skills on the floor or on the ward, which is why the best and the safest option really is going home.
Now, often you will also find that if a patient with a tracheostomy needs rehabilitation, whether it’s neurological rehabilitation, cardiac rehabilitation, whatever the case may be, you will find it’s very difficult for them to go to a rehabilitation facility because they don’t have the skills to look after a tracheostomy. So, that’s why this is such a unique skill.
We have seen that patients in the community or on the hospital ward have passed away because they don’t have the skills around them to look after a tracheostomy, that’s how dangerous it is. It’s fairly risky going from ICU to a hospital floor or hospital ward. For our US audience, it’s very risky going from ICU to an LTAC, a long-term acute care facility or even subacute, it’s very risky. Patients die, they don’t get the care and treatment they need, and they’re often left to their own devices with very negative consequences. So that’s why Intensive Care at Home is the best option here.
So, that’s hopefully setting the scene why I want to make a video or why I’m making a video about this because if you don’t have intensive care nurses, 24 hours a day, with a tracheostomy, if you can’t go home with a tracheostomy, assuming you can’t be decannulated, I mean the goal for anyone on a ventilator with a tracheostomy should be to be decannulated, to have the tracheostomy removed. That should always be the goal. Let me be very clear here. That always needs to be the goal, but this video really is for families or for patients where a tracheostomy decannulation is not on the cards, not in the short-term, not in the long run. That’s who this video really is for today, so that you know what your next steps are.
Before I break it down further, let’s also look at the evidence. Healthcare is all about evidence-based. So, for example, when patients go home with a tracheostomy, they need to have 24-hour specialist nursing care, not general nursing care.
The reason they need specialist nursing care with intensive care nurses, 24 hours a day, is once again because intensive care nurses are the only nurses that are properly trained on taking care of a tracheostomy. There are some emergency department nurses as well because they would’ve done studies for post graduate critical care, they would know what to do as well. But the bottom line is it must be a critical care nurse, 24 hours a day.
Reason being is that there’s overwhelming evidence for that. So, the research has been done. So, when you look at our website, intensivecareathome.com, you’ll find a section, the Mechanical Home Ventilation Guidelines. Now, these evidence-based Mechanical Home Ventilation Guidelines have been published 15, 20 years ago in Germany where Intensive Care at Home, Germany was the first country that embraced Intensive Care at Home on a large scale. They’ve come up with the guidelines, which are now the Mechanical Home Ventilation Guidelines that are evidence-based because Intensive Care at Home has been around in Germany for nearly 30 years now and patients are going home from ICU directly with critical care nurses, 24 hours a day.
The same in Australia now with Intensive Care at Home, we are doing the same there. Our clients go home from ICU directly, 24 hours a day, with critical care nurses. It cuts the cost of an ICU bed by 50%. That’s 5-0, and it is an absolute no-brainer. It’s a win-win situation. It improves the quality of life for patients and their families or quality of end of life. It cuts the cost of an ICU bed by 50% and it frees up the most sought-after bed in a hospital, which is the ICU bed. It’s a win-win situation all together. Thank God now there are guidelines around it and thank God now there’s providers like ours who are third-party accredited for Intensive Care at Home nursing that can make it happen.
Now, let me also be clear and mention a word of warning here. So, in our earlier days when we first got started with Intensive Care at Home, there were some clients at home where the funding body only funded night shifts for us for clients with a tracheostomy. We were making some noise and saying, “Look, funding body. You need to fund 24-hour nursing care. Here is the evidence for it. If you’re not funding it, those patients are at risk of dying.” We were laughed at, we were told, “Oh, you just want to promote your business and you don’t know what you’re talking about.” We realized at the time we are not talking to intensive care professionals. We’re talking to people who want to cut cost.
Anyway, cutting a long story short, three out of those clients died during times when we were not there, just as we predicted. We are still appalled to this day that this is what’s happened, and we did go back to the funding bodies, which in this instance was the NDIS (National Disability Insurance Scheme) here in Australia and we still waiting for response. I do believe the families that lost their loved ones are so traumatized, they still can’t face what’s happened at the time, and that’s why we are all about quality and safety.
Show me any other organization in the community when it comes to long-term ventilation, tracheostomy or tracheostomy care that’s bringing in standards and quality care. Show me one organization that’s doing what we are doing in terms of advocacy, that’s doing what we are doing in terms of educating people. If people have something to say about a tracheostomy and the ventilator in the community, why are they not saying it? Why are they not saying it? Why are they not bringing in quality standards, which is what we are doing here.
So now, that we’ve set the scene around what is actually needed in the community, which is 24-hour nursing care with critical care nurses for patients with a tracheostomy, adults and children, it is important that the funding is getting organized.
So, how does that work? So, here in Australia for example with Intensive Care at Home, we are accredited to get NDIS (National Disability Insurance Scheme) funding to work with NDIS participants. We are accredited to work with TAC (Transport Accident Commission) clients in Victoria. We are accredited to work with iCare clients in New South Wales, as well as we are NIISQ (National Injury Insurance Scheme in Queensland) accredited in Queensland, and we are DVA (Department of Veteran Affairs) approved all around Australia. We also have received funding through public hospitals, private health funds, and departments of health. So really, there’s a number of funding bodies that are accessible to you if you’re watching this.
Now, I know we have a lot of viewers from the U.S. and from the U.K. as well. The principle is the same. You will need critical care nurses, 24 hours a day. Anything less is dangerous, and it could cost you a loved one’s life. Like I said, we have all the evidence here, but the principle is the same. You’ve got not only an argument for taking a loved one home from ICU, from a hospital, from LTAC for quality-of-life purposes, quality of end-of-life purposes. You have the reasons that you’re helping the hospital to free up the bed that they so desperately need. You have an argument to free up hospital resources including staff equipment that they so desperately need, and you have an argument to cut the cost of the intensive care bed or hospital bed by approximately half, by approximately 50%. So really, all your arguments are on your side and if you are in the U.S. or in the U.K. and you want help from us, please reach out to us. We can help you privately.
So, coming back to what we are doing here in Australia, the next thing that you need to do is approach the appropriate funding body. Like I said, NDIS would be the most common one at the moment, but also, God forbid, if you were or your loved one were in a car accident, is that TAC in Victoria? Is that iCare in South Wales or any other motor vehicle accident insurance or are you a DVA client for example? Could you get funding through the Department of Health? Do you have private health insurance? Would the hospital pay for it because they want the bed so they might as well pay for it. So, there’s numerous ways to go about funding.
If you are going through a funding scheme like NDIS, TAC, NIISQ, iCare, DVA, you need a case manager or for the NDIS, it’s an NDIS support coordinator in particular. We provide NDIS support coordination, and we have our own in-house Level 2 and Level 3 NDIS support coordinator, Amanda, and Level 3 NDIS support coordination in particular is specialist support coordination, which is really what is needed for clients with tracheostomy because it’s such a uniquely specialized area in healthcare that you can’t just leave that to anyone.
Once you’ve got the right NDIS support coordinator, and I highly encourage you to reach out to us if you need an NDIS support coordinator, then it’s all about getting on the NDIS, getting an NDIS plan, getting engaged with a complex planner from the NDIS. It’s a case of then getting doctor’s letters for 24-hour nursing care, nursing assessment for 24-hour nursing care. We can also do nursing assessments with Intensive Care at Home. Not many nursing services can do nursing assessments for tracheostomy or ventilated patients because most nursing services are general nursing services. They don’t deal with tracheostomy or ventilation. So, even if you reach out to any other general service provider, they might tell you that they can look after a tracheostomy, but can they really? What are their credentials? You’ve got to ask all the right questions.
Then once you’ve selected an NDIS support coordinator, like I said, nursing assessment, OT functional capacity assessment, you need a physiotherapy report, you probably need a doctor’s letter, and that is pretty much what you need to get NDIS funding over the line. It’s fairly similar with other funding bodies. You just need to provide the evidence, which is really important.
Once that’s out of the way, then funding will be approved. Then you can start it looking with us to build a team. You want the right team in your home. You don’t just want anyone working with you or your loved one. You want the right team, and we get you engaged and included in building the team. We don’t just send you anyone, we send you nurses that you feel comfortable with, that are the right fit for your loved one or for you and for your family of course.
Next, once the right team has been built, it’s a case of managing the day-to-day a nursing care that needs to be managed with a tracheostomy. I assume if you are watching this and you might have a loved one with a tracheostomy, often they are immobile, so you need to look at all the equipment, hospital bed, hoist, lifting machines, spare tracheostomies, suction machines, monitoring monitors, potentially wheelchair so that everything is at home, nebulizers. Those are the most things that you need when you have a tracheostomy at home. Could be more, sometimes could be less. Also, things like blood pressure cuff, stethoscope so the nurses can listen to your chest, making sure there’s air going in and so forth. But also on a day-by-day basis, as you probably have observed in the hospital, it’s also a case of in the hospital you’re often confined to a hospital bed, whereas at home it’s all about providing the community access as well.
One of the depressing things about hospitals is patients are stuck in a hospital bed, in an ICU bed for weeks or for months on end, and that is really the main advantage of our service that all of a sudden you can go home, and you can participate in a life that you want. We enable community access. That’s really a big thing for us. All of our clients, without any exception, have community access regardless of their perceived limitations, irregardless of whether they’re on a ventilator, whether they have a tracheostomy, whether they have both, whether they have spinal injuries, whether they can’t move, they still have community access, we take them out That is one of the main differences between hospital and home. In a hospital you might be lucky if someone takes you down the courtyard or if someone sits you at the window for some daylight.
Then, once you’re at home, everything is set up, you will see similar to a hospital what the nurses are doing, like giving regular nebulizers, regular suctioning, making sure that tracheostomy is patent, making sure the inner tube is changed on a regular basis, if there is an inner tube. Most patients have an inner tube, but there are some patients who don’t have an inner tube. Especially pediatrics, they don’t have an inner tube often, but adults often have an inner tube. It’s important that the tracheostomy patency is established at all times.
A tracheostomy block can literally be fatal, which is why your loved one or if you are the patient need intensive care nurses, 24 hours a day, nothing less than that. Also, when it comes to dressing changes, it’s an intensive care nursing skill. It’s an intensive care nursing skill to look at skin integrity and if the skin is broken, for example, making sure you apply the right dressings for example.
Also, if for example, your loved one or you have a cuffed tracheostomy as opposed to an uncuffed tracheostomy, making sure the cuff is up, is inflated the right way, making sure the cuff goes up or down for the right circumstances. Sometimes the cuff can go down maybe for swallowing exercises, for breathing exercises, but you still need the intensive care nurse to know how to take the cuff up and down and knowing how much to inflate and those are very unique and specialist skills that you need at home.
Also, when the tracheostomy tape is changed, again, this is an intensive care nursing skill. Imagine the tape is changed and the tracheostomy is coming out. That’s another thing, if the tracheostomy, God forbid, does come out, the intensive care nurse there to be able to manage this unstable situation, put the tracheostomy back in within less than a minute to avoid any further damages.
Also, what is important when you are going home with nurses, it’s also important that you have the nurses liaise with the hospital or with any specialist doctors that you will have going forward. So, that is really important as well.
Now, I’ll also give you some examples I mentioned earlier about that patients have died in the community if they don’t have intensive care nurses, 24 hours a day. I’m aware of other clients at the moment that are bouncing back between the hospital and the home because they don’t have 24-hour intensive care nurses at home. So, it is really a very dangerous situation of not having the intensive care nurse, 24 hours a day. It is literally life-threatening.
So, I really hope that illustrates off what is the “blueprint” for hospital and ICU discharges for patients with the tracheostomy adults and children and also making sure they are not bouncing back into ICU all the time which is what we see when people don’t have the 24-hour intensive care nurse. They either unfortunately die or unfortunately they bounce back into ICU all the time, which is not what you want, which is not what the ICU wants either. None of it makes sense, whether it’s your life or whether it’s the hospital that you shouldn’t be at home predictably, I think that is really the bottom line for our service.
We keep our clients at home predictably. It’s that predictability that we bring to our clients, their families, but also, we bring that predictability to hospitals so they know they can safely discharge the patients into the community without having to worry about or are they coming back, are they bouncing back all the time?
So also, to sum it up here one more time, a registered nurse that hasn’t got any ICU experience won’t be good enough to look after a tracheostomy client in the community because simply they haven’t worked in ICU. In ICU, you get taught all the ins and outs of a tracheostomy and if you don’t know the ins and outs of a tracheostomy, you are putting yourself or your loved one into a life-threatening situation. It’s as simple as that.
Now, let’s open the floor here for some questions. If you have any questions to today’s topic, please type them into the chat pad and if you want to talk to me directly here, you can use the StreamYard link here. You can click on the link and join me here live on the show, or you can type your questions into the chat pad. You can ask anything about intensive care and if you don’t have any questions, I have so many questions that have come in during the week that I can answer now. So, please type your questions into the chat pad. I can see there’s quite a few people here or you wait for me to read out the questions and answer them there.
The first question is from Tammy who says, “Hi, Patrik. My fiancé is on dialysis and on a ventilator and he wishes to go home but needs help with at least the ventilator or the dialysis. I could do one but not both. Please get back to me when you can about any information you have on this. I have done patient dialysis at home with him prior to him having the ventilator and the tracheostomy, but I’m trying to see if he can go home, dialysis, ventilator and tracheostomy. Like I said, I can train for one if needed, but I couldn’t do both.” Yeah, I could not agree more with you, Tammy, that you can’t do all of it. Look, doing dialysis at home is definitely possible. Doing dialysis ventilation and tracheostomy at home is definitely possible and we can set it up successfully and it’s the same.
Once again, I mentioned I’ve just spent half an hour talking about why you need an intensive care nurse at home if you have a tracheostomy and you need that, 24 hours a day, and once again, it’s evidence-based at the Mechanical Home Ventilation Guidelines. Similar to what I talked about before, we can set up home care for you with dialysis, ventilator, tracheostomy, send intensive care nurses, 24 hours a day. I don’t know where you are, you have not shared your location, but once again, it cuts the cost of an intensive care bed by 50%. You can already see that your fiancé needs to be at home and not in an ICU. You have already seen that the grass is greener on the other side. It just needs to be safe, and we can ensure that a transition home for your fiancé will be safe and seamless. Similar to what I talked about before, let’s organize the funding, let’s organize a team, let’s organize the equipment and we have done it successfully many, many times.
So, I hope that answers your question, Tammy. Please reach out to us here at intensivecareathome.com. Go to intensivecareathome.com, call us on one of the numbers on the top of our website or assume please send us an email to [email protected].
Next question from Navpreet who says, “Hi, Patrik. My father is 66 years old. He’s been in ICU for 14 days. Two days ago, they did a tracheostomy because he couldn’t breathe on his own. He’s still on the ventilator after tracheostomy because he still can’t breathe on his own. The doctor said they will train him step-by-step and it’s really important if his heart and brain can endure during this challenging time. He is having neurological problems. The brain is not giving signal to the respiratory system to breathe. The other organs are okay. Keeping his vital signs within normal limits. He opens his eyes, he sheds tears sometimes. He responds to stimuli, answers to commands given by the doctor, but when told to breathe, he tries but gets tired immediately because his muscles are too weak.
He was diagnosed last year with Parkinson’s disease, diabetes, and he has little brain damage because of some little brain strokes. In the last three months he was losing weight because he couldn’t eat and had sleep disturbances during the night and slept a lot during the day. Is there hope for him? How much it can take for him to recover and wean off the ventilator? What can we do for him? Thank you in advance for your answer from Navpreet.” Thank you so much Navpreet for sharing your dad’s situation. So, here’s what they should do to begin with.
They should have a weaning plan for him, and that would include physical therapy, weaning down ventilation, going from a controlled mode to pressure support to CPAP ventilation mode. Those are the things that should be done first, but it also includes mobilization which means getting him out of bed. That’s going to be really important because you’re talking about his muscles are so weak, well, his muscles will not strengthen by him lying in bed. His muscles will strengthen by him getting out of bed, sitting in a chair. That in and of itself will strengthen his upper body muscles and that in and of itself with the muscles gaining more strength will help him to wean off the ventilator.
Also, if he’s had some minor strokes and he’s got some neurological deficit, imagine you’re lying in bed with neurological deficit and you’re lying in bed for weeks on end. Now, do you think it’ll help your brain if you’re sitting up, if you’re getting stimuli, getting physical therapy, sitting upright, looking around, which is something that’s difficult to do when you’re lying in bed, you’re staring at the ceiling. Well, which of the two would you prefer, staring at the ceiling or sitting in a chair looking around what’s happening? It is common sense.
Don’t let the hospital convince you they can’t mobilize your loved one. Really don’t. Because that’s what they’re often trying to do. They’re trying to convince you that they can’t mobilize your loved one. It’s nonsense. It is common sense that in order to wean a critically ill patient of the ventilator, there needs to be some physical stimulation, i.e., physical therapy, getting out of bed, sitting upright, breathing exercises, physiotherapy or physical therapy.
Then, they need to work with a weaning plan. A good ICU will work with a weaning plan. They will map out steps, today we’re doing this tomorrow, we’re doing this, by the end of the week we want to have him in a different ventilation mode. In 8 days, we want to have a spontaneous breathing trial. Those time periods can be shorter. It really depends on the circumstances.
It could be a goal like, “Okay, today we want to wean down pressure support Tomorrow, we’re going to wean down or the other way around, we’re going to wean down the breathing rate. In two days, we want to have a spontaneous breathing trial on a T-piece, on a tracheostomy shield, tracheostomy mask.” But there needs to be a plan. The goal for any critically ill patient in intensive care must be to wean off the ventilator, adults or children, doesn’t matter.
So, God forbid if all of that fails despite of all the best efforts from the hospital. If your dad can’t be off the ventilator, absolutely the best option probably is Intensive Care at Home, but he’s not there yet. It’s only been a couple of weeks.
Please do not underestimate the power of physical therapy and mobilization. It makes all the difference. Just because he’s not answering to commands, to all commands just as yet, there’s something there. The more awake he gets, hopefully he can work with a physical therapist, with a physio, with the nurses, with the doctors to wean off the ventilator. He probably needs to be a little bit more awake for that, but that will hopefully come over time. So, I hope that answers your question.
Let’s move on to the next question. In the meantime, if you have any questions in regards to today’s topic or any other questions when it comes to tracheostomy, ventilation, intensive care or Intensive Care at Home, type them into the chat pad or join me live on the show here, click on the StreamYard link and you can talk to me directly here and I will answer your question here.
So, next question from Aubrey. Aubrey says, “Hi, Patrik. My son has just left ICU and he has been discharged to my care and is now living with me with a tracheostomy. I’m not sure whether I’d be fine, but three weeks in and I am absolutely exhausted. Can Intensive Care at Home help?” Absolutely Aubrey. Oh, my goodness, I’m so sorry to hear that. This is exactly what I was talking about earlier at the beginning of the presentation, that whenever patients go home with a tracheostomy, they need intensive care nurses, 24 hours a day. Aubrey, you are at risk of losing your son. You are exhausted. That’s my whole point today. My whole presentation was about why you need intensive care nurses, 24 hours a day, and knowing that patients have died in the community, adults, and children with a tracheostomy because they didn’t have 24-hour nursing care with intensive care nurses, your son is at risk of dying. That is an unfortunate reality and I’m not making it up.
So once again, I encourage you to reach out to intensivecareathome.com. Call us on one of the numbers on the top of our website or send an email to [email protected]. Okay, so that was Aubrey.
Elisa asking a question here says, “I have a question about decannulation. How do I advocate for my mother’s decannulation? She just came back from the hospital to a SNF (Skilled Nursing Facility) because she had mucus plugs from lack of proper humidity.” I will answer your question, Elisa, but this is exactly my point. If she’s been to a SNF, they wouldn’t know how to humidify, and that’s exactly why she’s bouncing back to hospital. In a SNF you don’t have intensive care nurses, 24 hours a day. That is exactly my point.
You’re lucky your mom is still alive, but a SNF wouldn’t have a clue what to do with a tracheostomy, which is exactly why your mom bounced back to a hospital because they didn’t humidify. Anyone that hasn’t worked in ICU wouldn’t know how to humidify, why to humidify, how often, how frequently, what else to check. This is exactly my point anyway.
So, Elisa, how do you advocate? So, the first thing is you need to find out is your mom ready for decannulation. If she had a mucus plug because of lack of proper humidity, let’s just say she would’ve had humidification. Would she be ready for decannulation? I don’t know. I don’t have the answer, but here is what needs to happen if the tracheostomy should be decannulated.
The first thing that should happen is, is your mom swallowing? If she’s swallowing, great, that’s one box ticked.
Number two, is she coughing? Does she have a good strong cough?
Number three, how often does she need suctioning? How frequently do the nurses need to suction?
Number four, what’s the size of the tracheostomy? The smaller the size, the higher chances that the tracheostomy can be removed.
Number five, is she also needing oxygen while she’s on the tracheostomy. If yes, how much oxygen?
Number six, is she obeying commands? Is she following instructions? Is your mother awake? Can she follow instructions around? Can she cough? Can she bring up her secretions? Can she swallow?
Then number seven, does she have a cuffed tracheostomy or an uncuffed tracheostomy? If she has a cuff tracheostomy, is the cuff down?
Now, I know sometimes there’s confusion around a cuffed or an uncuffed tracheostomy, but I can clarify that confusion because I’ll show you a tracheostomy here. Here is a tracheostomy. Okay, this is a cuff tracheostomy and cuff is down right now. You can see the tracheostomy here and the cuff is down right now.
Now, I will show you how to inflate the cuff and I will show you what the purpose of it is. So now, this is the tracheostomy, cuff is down, and now I put the cuff up. Can you see that the balloon is going up?
So, what’s the purpose of all of this? So, when someone is having a cuff tracheostomy and the balloon is up all the time, and if someone can’t swallow, that’s okay. The balloon is up and prevents secretions from going into the lungs, prevents aspiration. If you know that someone can’t swallow, you leave the cuff up. For kids, kids don’t have cuffed tracheostomies, but the tracheostomy is sealing the airway anyway because kids have such a narrow airway.
So, if you want to find out if someone can swallow, you put down the cuff. You put down the cuff. When you put down the cuff and someone can’t swallow, what do you do then? You put the cuff up again, but that’s also a sign that she or your loved one is not ready to swallow, and therefore the tracheostomy needs to stay in until the swallow test has been passed.
So, Elisa coming back to you. So, she is swallowing, she’s coughing infrequently, and she’s awake, never inflated. Okay, good. So, that means she can swallow. She must be able to swallow. I would assume she passed the swallowing test. She must have done.
So, they suction infrequently. If they suction infrequently, what does that mean? Does that mean two times a day? Does it mean every two hours? What does that mean? Maybe if you can type, because I am a bit confused by your answers here, the easiest way I can help you Elisa is if you come on the call here, it is the easiest way. Here’s the link again, that’s the easiest way we can sort out your problem. That’s the quickest way I can help you if you talk to me directly here. You don’t have to go on camera, you can just talk to me with your camera off, if it’s up to you, but that’s the quickest way I can help you. Unless you want to type in detail what your mother’s situation is exactly.
So, in the meantime, I have another email here from Salvador who says, “Hi, Patrik. My dad is 60 years of age, and he has been in ICU for 8 days. He had motor neurone disease for the last 10 months. He developed sepsis and was hospitalized for the second time after 4 months. He has a G tube, a PEG (Percutaneous Endoscopic Gastrostomy) tube, but his large intestine was not getting enough oxygen and he had an internal ischemia. Part of his large intestine was removed. They did a colostomy procedure on him. He was in a medically induced coma for 4 days during these procedures. They did a CT scan of the abdomen to discover why there was not enough oxygen. Because of the motor neurone disease, he can’t talk, walk, or swallow.
His breathing and oxygen were not at the safest numbers. So, he was intubated on a ventilator again yesterday. He’s on 55% to 60% oxygen or FiO2 (Fraction of Inspired Oxygen). The GI doctor wants to strongly recommend taking him off life support. It’s only been 8 days so far. He’s on intubation with no sedation. Nurse says he’s weak, but still tolerating the intubation with just pain medications, and he’s drowsy and opens his eyes.”
Well, clearly, because your dad has MND, and let’s just say he’s got a will to live and a wish to live, he needs a tracheostomy. Here’s what most likely happen. Let’s just take the best-case scenario. Let’s just say they can wean him off the ventilator and extubate him. He will need BIPAP (bilevel positive airway pressure) or CPAP (continuous positive airway pressure) at least for a few days, but eventually with the MND, he will need BIPAP or CPAP anyway.
If he needs BIPAP or CPAP down the line with MND and the inability to swallow, he’s at high risk of aspiration and getting an aspiration pneumonia. If he ends up with an aspiration pneumonia, he will go into ICU and he will end up with another breathing tube, and then he won’t be able to come off and then he will need a tracheostomy.
You need to consider whether tracheostomy now is the right thing to do straight away while he’s in ICU, because the reality is if he needs a tracheostomy down the line, he will end up back again in ICU. That is the unfortunate reality.
Let me talk about motor neurone disease in general and what are the options. Most of you would’ve heard of Stephen Hawking’s, the renowned U.K. scientist who had motor neurone disease for most of his adult life, and he lived well into his 70s on a ventilator with a tracheostomy, with 24-hour intensive care nurses. That’s just one aspect of life expectancy when it comes to motor neurone disease.
So similar to some of our Intensive Care at Home clients, they also live at home with a tracheostomy, with MND for many years on end. So, it’s definitely possible, definitely possible. So, a tracheostomy is the right thing to do here.
But let me talk to Elisa.
Elisa: Hello, Patrik, are you there?
Patrik: I am here. I can hear you. Can you hear me?
Elisa: I can hear you. There’s so much to what you’re saying that at some point I want to be able to get with you. Listen, I’ve stayed in the LTACs and the SNFs with my mother for 4 months. I have so much to tell you, and I can tell you that everything you say has guided me through this whole process. It has been, for lack of better word, hell. But your advice has made it effective and it’s empowered me to make some decisions that have put me in a better position than the majority of the people who have experienced this, especially if they’re not there, which is not typically what happens, but I have because of your advice, stayed and watched the whole process.
I tell you, even when you’re there, there’s so much unskilled or so many mistakes that if you’re not watching your loved one and if you’re not going to take them home, I just say that you’re going to really have a really tough time keeping them alive.
So, the idea is to get my mother home and she is in a SNF. We were trying to decannulate her and don’t know how to successfully do it because they’re in the SNF and they don’t even have an ENT who probably would be more of the correct professional to diagnose if she has swallowing issues and things like that. But at any rate, we’re trying to get her decannulated.
She had to go to the hospital yesterday from having an infection. She had been suctioned a lot. Prior to this she was coming from an LTAC where she did not have a lot of suctioning, but she had injuries from the LTAC.
But she’s at a SNF (Skilled Nursing Facility) now, and at the SNF, they have no means, no correct means to be able to hydrate her. So, she’s being hydrated on oxygen. She has not been on oxygen.
So, to make a long story short, she has not had any HMEs or access to HME because they don’t have them on hand. I brought my own HMEs. I ran out, and since she has had no hydration, I had to advocate for the hydration. I had to tell them when to hook her up. Then not only that, it’s not efficient for her. It’s not the moisture that she needs because she has the mucus plugs.
So now, she’s just one day back from the hospital, which if you’re at a SNF, they’re not going to advocate for you to even go to a hospital and then you have to, based on what you’ve told me, you have to take your power back. So, I had to essentially go against the advice, the recommended advice, get my mother to the hospital, which fortunately is across the street, and they had the mechanics to take out the mucus plugs.
They put back in a tracheostomy. Nobody told me that the tracheostomy gets occluded, the entire tracheostomy. They had to take it out, and this is after when she went to the emergency. They were going to send her back because they think they have the means here to unplug her. Says, no, she couldn’t even get her cannula back in. So, they took the tracheostomy out, and when I saw how colluded that tracheostomy was, of course the goal is to get all the services at the hospital where they have the highest quality of care.
But I took a picture of the occluded tracheostomy, which when I was at the SNF, they told me, “No, that doesn’t happen.” Of course it happens. Turns out you have to get the tracheostomy changed every month. It had never been changed from the time she left ICU to the LTAC, which she stayed in 2 months and then to another ICU, back to the skilled nursing, it had never been changed. We’ve been up here a month, so she’s had the same tracheostomy for 4 months and it was colluded.
Patrik: I’m not surprised to hear all of that, Elisa, because once again, the minute you leave ICU, no one knows what to do with the tracheostomy. I’m not surprised hear any of it.
Just quickly talking about the HME, she should really only have the HME sparingly. She should have a humidifier attached.
Elisa: Yeah. That’s right.
Patrik: The HME (Heat and Moisture Exchange) is fine if people have community access, if they’re going out, you need to use an HME. However, if you are bed-bound or chair-bound, you should use not an HME. You should use a humidifier much more effective. The HME has probably contributed to the blockage, most likely. HME is a last resort. It’s better than nothing but the gold standard is the humidifier. But like I said, no one would have any. Very few SNFs, LTACs have an idea what to do because they haven’t really seen it.
Elisa: Yeah. Right.
Patrik: Elisa, I do need to wrap this up here.
Elisa: Absolutely.
Patrik: I do apologize, but you’re welcome to reach out to me outside.
Elisa: No worries. Absolutely.
Patrik: Just go to Intensive Care at Home or to Intensive Care Hotline and you can contact me through the website.
Elisa: Absolutely.
Patrik: But thank you. Thank you for sharing with our audience.
Elisa: Yes. Take care, Patrik, and thank you for all your help.
Patrik: Thank to you. Thank you so much. Thank you.
Elisa: I’ll talk to you soon. Bye-bye.
Patrik: Thank you. Bye-bye. Bye.
I do need to wrap this up in a minute here. I just want to obviously tell everyone that if you have a loved one in intensive care, you want to go home with a tracheostomy or a ventilator, please reach out to us at intensivecareathome.com. Call us on one of the numbers on the top of our website or send us an email to [email protected]. Or you might be at home already and you might have insufficient support. You’re bouncing back into hospital all the time or going back into ICU all the time. If you have a ventilator, if you have a tracheostomy, please reach out to us as well.
With Intensive Care at Home, we are currently operating all around Australia, in all major capital cities as well as in regional and rural areas. We are an NDIS-approved service provider all around Australia, TAC approved in Victoria as well as WorkSafe, iCare in New South Wales, NIISQ in Queensland, as well as DVA Department of Veteran Affairs all around the country.
We have also received funding through public hospitals, departments of health, private health funds, etc.
We’re also providing Level 2 and Level 3 NDIS support coordination if you need help with that. We’re also providing NDIS specialist nursing assessments if you need help with that.
If you are an NDIS support coordinator and you don’t know how to get nursing care funding for your participants, especially when it comes to ventilation, tracheostomy, home TPN (Total Parenteral Nutrition), IV potassium, IV magnesium infusions, IV antibiotics, port management, central line management, PICC (Peripherally Inserted Central Catheter) line management, as well as Hickman’s line management. We do all of that at home and it’s often NDIS funded, but also through other funding bodies. We also provide palliative care at home. We also send our critical care nurses into the home for emergency department bypass services. So, if you need nasogastric tubes unblocked, nasogastric tube changes, PEG tube changes, catheter changes, catheter blockages solved, we can do that for you in your home or in a residential aged care facility for example.
We are also hiring currently critical care nurses in Sydney, Melbourne, and Brisbane, and also in country Victoria in Bendigo, as well as in Warragul, also in Albury, Wodonga on the New South Wales Victorian border. If you are a critical care nurse with a minimum of two years critical care nursing experience, and you have ideally completed a post graduate qualification, we want to hear from you.
I just want to be clear that we are looking for staff that can work on a regular basis with our clients. We’re not an agency where our staff can come and go, that is not what we need. That is not what we stand for. We have a tailor-made solution for our clients, and that includes having regular staff work with them.
Now, if you are an intensive care specialist and you’re watching this, we’re currently expanding our medical team as well. We want to hear from you. If you are an intensive care specialist or you are an ICU consultant and you have bed blocks in your ICU, which you definitely do have, we want to hear from you as well. We can improve the quality of life and in some instances, quality of end of life for your patients and their families, adults and children, and you don’t even pay for it. But we can help you free up your bed.
If you’re a hospital executive watching this, we also want to hear from you because once again, we can help you eliminate bed blocks in ICU, pediatric ICU, as well as emergency department and on respiratory wards. Please reach out to us.
Once again, our website again is intensivecareathome.com. Call us on one of the numbers on the top of our website, will send us an email to [email protected].
If you like my videos, subscribe to my YouTube channel for regular updates for Intensive Care at Home, but also for families in intensive care, click the like button, click the notification bell, share the video with your friends and families, and comment below what you want to see next, or what questions and insights you have.
Once again, thank you so much for watching, and thank you so much for your support.
If you need Intensive Care at Home in the U.S. or in the U.K., please reach out to us as well. We can help you there privately.
Have a wonderful and blessed day.
Happy Easter and take care for now.