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Can My Mother Go Home After Two Months in ICU with MND (Motor Neuron Disease)/Amyotrophic Lateral Sclerosis (ALS), Ventilated, Tracheostomy & PEG (Percutaneous Endoscopic Gastrostomy) Tube?

If you want to know if your critically loved one with MND or motor neuron disease, in ICU can go home with Intensive Care at Home when they’re on a ventilator with a tracheostomy, stay tuned! I can answer that question for you today.

My name is Patrik Hutzel from intensivecareathome.com, and let’s dive into a question that we’re having from Alexandria today who says that her mother has been stuck in ICU with motor neuron disease (MND) for the last couple of months.

Prior to that, she was at home on BIPAP (Bi-level Positive Airway Pressure). She was still eating and drinking, but unfortunately, like we have seen many times over the years with MND patients or amyotrophic lateral sclerosis, also known as ALS, or Lou Gehrig’s disease, they end up on BIPAP. Then they often end up with an aspiration pneumonia, then they end up in ICU. They end up being intubated, and the only way forward, unfortunately, is then to have a tracheostomy or end of life.

More and more patients choose to have a tracheostomy and go home with a service like Intensive Care at Home, that is exactly the case with Alexandria’s mom who has been in ICU now for nearly 2 months. She hasn’t been able to wean off the ventilator, and she now has the tracheostomy. She’s also gone into kidney failure.

Now, they haven’t done a PEG (Percutaneous Endoscopic Gastrostomy) tube yet, but in this instance, I actually advocate for a PEG tube. What I mean, if you’ve seen some of my other videos, I always advocate against PEG tubes, but in a situation where it’s inevitable for someone to not come off ventilator, i.e., they’re going to be ventilator dependent most likely for the rest of their lives, then the PEG tube is actually the right thing to do. So, there are exceptions to the rule, and you need to know what the difference is. You need to know when to advocate for the right treatment.

I’ve worked in critical care nursing, including Intensive Care at Home for the last 25 years in 3 different countries. I can confidently say that we have saved many lives with Intensive Care at Home, but also with our consulting and advocacy.

Given that Alexandria’s mother is hemodynamically stable, there’s no reason for us that we can’t take her home. Now, what makes it a little bit more complicated is that Alexandria’s mom is needing dialysis. But again, that could be done as an outpatient in a dialysis center once she has 24-hour nursing care.

Now, initially, when I spoke to Alexandria, she said, “Oh, can you just send a nurse once a day or twice a day?” Basically, she wants to take her mom home from intensive care with a nurse coming in once or twice a day. Unfortunately, I have to be very blunt here, that could be a death sentence. The reason I’m saying that is we have seen clients pass away when there’s no 24-hour nursing care.

Bear in mind, with Intensive Care at Home, we are replicating an intensive care bed in the community. What that means is we’re sending intensive care nurses in the home, 24 hours a day, predominantly for long-term ventilation with tracheostomy. This is obviously serious stuff, and therefore, you can’t just send a nurse once or twice a day. People have died if you do that, especially when it comes to long-term ventilation and tracheostomy, but it doesn’t even have to be long-term ventilation, it could be other conditions such as tracheostomy without ventilation. Tracheostomy is an unstable airway, an artificial airway that needs management from tracheostomy competent nurses, 24 hours a day, and you only get tracheostomy competent nurses if you have worked in critical care nursing for at least 2 years.

So, I hope that answers your question for today in regard to MND or ALS conditions.

When it comes to tracheostomy and ventilation, there’s definitely quality of life at home if you’ve got the right level of support. Keep in mind, from a funding perspective, once again, an ICU bed costs $5,000 to $6,000 per day, whereas Intensive Care at Home costs 50% of that.

Keep in mind, once again, that in Australia in particular, with the NDIS, there’s NDIS funding for those conditions with critical care nurses at home. By the time you’re going home, we will organize the equipment. We will help you with organizing the right equipment, whether it’s hospital bed, hoist, ventilators, suction machines, monitors, but more importantly, we organize the right staff for you. We organize the right teams for you.

With Intensive Care at Home, we are providing 24-hour critical care nursing at home, and it is evidence-based such as within the Mechanical Home Ventilation Guidelines. We provide a genuine alternative to a long-term stay in intensive care for mechanical ventilation, tracheostomy, Home BIPAP (Bilevel Positive Airway Pressure), Home CPAP (Continuous Positive Airway Pressure) ventilation without tracheostomy, tracheostomy without ventilation, Home TPN (Total Parenteral Nutrition), home IV potassium infusion, and home IV magnesium infusion. We’re also providing central line management, PICC (Peripherally Inserted Central Catheter) line management as well as Hickman’s line management and port-a-cath management. We’re also providing nasogastric tube management and PEG tube management at home. We’re also providing ventilation weaning at home, and we’re also providing palliative care at home.

We’re also sending our critical care nurses into the home for emergency department bypass services. We’ve done so successfully as part of the Western Sydney Local Area Health District, their in-touch program, saving approximately $2,000 per patient that we keep at home instead of letting them go to ED.

We’re also in a position to cut the cost of an intensive care bed by around 50%. The intensive care bed costs around $5,000 to $6,000 per bed day. Our service costs between $2,500 to $3,000 per bed day. We’re freeing up a much needed and in-demand ICU bed. We’re improving the quality of life for patients and their families, so that it’s a win-win situation all around.

With Intensive Care at Home, we’re currently operating all around Australia, in all major capital cities, as well as in all regional and rural areas. We are a NDIS (National Disability Insurance Scheme) approved service provider all around Australia, TAC (Transport Accident Commission) and WorkSafe in Victoria, iCare in New South Wales, NIISQ (National Injury Insurance Scheme) in Queensland, the Department of Veteran Affairs (DVA) all around Australia. Our clients and we as a provider have also received funding for public hospitals, private health funds, as well as departments of health.

We are the only service provider in Australia in 2024 that has achieved third-party accreditation for Intensive Care at Home nursing. We’ve been achieving this level of accreditation since 2012. No other service provider has achieved this high level of accreditation in the community that has created more intellectual property for Intensive Care at Home nursing than we have. That puts us in a position to employ hundreds of years of critical care nursing experience combined in the community, and that puts us in a position to safely look after the highest acuity clients in the community in Australia in 2024.

If you’re at home already and you’re watching this, and you realize that you don’t have the right level of support, I will give you a very tangible example today. One of our first clients about 10 years ago was a client who was at home on a ventilator with a tracheostomy with a spinal injury, and he had a support worker model. Of course, support workers just can’t keep a patient at home on a ventilator with a tracheostomy. That’s like flying the airplane with a cabin crew instead of the pilot, because this client, like many other clients, was at high risk of dying. He was going in and out of ICU because support workers simply don’t have the skills, the experience, and knowledge on how to look after a ventilator and tracheostomy client. It’s an intensive care and critical care nursing skill. Full stop. It’s not even the skill of a registered nurse with general experience.

Eventually, the client found out about us, and we were proving our concept with this client very fast. When we worked with the client and we sent him intensive care nurses, 24 hours a day, he never ever went back into ICU ever again, and he was safe. We can do the same for you if you’re not safe at home, including the advocacy that goes along with it to get the relevant funding. We have always successfully advocated for our clients, otherwise, we wouldn’t be in business.

This is also why we’re providing Level 2 and Level 3 NDIS Support Coordination. We have a team of NDIS support coordinators, and they have a wealth of knowledge. I have done an interview with one of our NDIS support coordinator, Amanda Riches, and I’ve put a link to an interview with her in the written version of this blog. We’re also providing TAC case management and WorkSafe case management in Victoria with Lucy McCotter.

If you are a NDIS support coordinator or a case manager from another organization watching this, and you’re looking for nursing care for your participants, please reach out to us as well. If you’re looking for funding for nursing care for your participants, and you don’t know how to go about it and what evidence to provide, I encourage you to reach out to us. We can help you with the right level of advocacy. We can also provide NDIS specialist nursing assessments done by critical care nurses with a legal nurse consulting background.

If you are a critical care nurse and you’re looking for a career change, we’re currently hiring for jobs for critical care nurses in the home in Melbourne, Sydney, Brisbane, in Albury, Wodonga, in Bendigo, in Geelong, and Warragul in Victoria. if you have worked in critical care nursing for a minimum of 2 years in ICU, pediatric ICU, ED, and you have already completed the postgraduate critical care nursing qualification, we will be delighted hearing from you.

I do have a disclaimer though, because we are offering a tailor-made solution for our clients, which includes regular staff, our clients want to have the same staff coming over and over again because they are so vulnerable and so special, that’s why we need regular staff. So, if you’re looking for agency work where you’re coming and going, this is not the right fit for you. We’re looking for consistency and our clients are looking for consistency. So please, only apply with us if you can give us regular and consistent availabilities for shifts. If you’re really keen on building relationships with us and with our clients, you’re welcome to apply. Otherwise, it’s not going to work.

If you’re an intensive care specialist or an ED specialist, we also want to hear from you. We are currently expanding our medical team as well.

We can also help you eliminate your bed blocks in your ICU and ED for your long-term patients or for your regularly readmitting patients with our critical care nursing team at home. We’re here to help you take the pressure off your ICU and ED beds. In most cases, you won’t even pay for it. Even if you do pay for it, it’s much more cost-effective than what you’re paying in ICU or ED for.

If you’re a hospital executive watching this and you have bed blocks in your ICU, ED, and respiratory wards, please reach out to us as well. We can help you there fast and privately as well.

If you’re in the U.S. or in the U.K. and you’re watching this and you need help, we want to hear from you as well. We can help you there privately as well.

Once again, our website is intensivecareathome.com. Call us on one of the numbers on the top of our website or simply send us an email to info@intensivecareathome.com.

If you like my videos, subscribe to my YouTube channel for regular updates for families with Intensive Care at Home and intensive care. Click the like button, click the notification bell, comment below what you want to see next, what questions and insights you have from this video, and share the video with your friends and families.

Thank you so much for watching.

This is Patrik Hutzel from intensivecareathome.com, and I will talk to you in a few days.

Take care for now.