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My name is Patrik Hutzel from Intensive Care at Home at intensivecareathome.com, where we provide tailor-made solutions for long-term ventilated adults and children with tracheostomies at home, tailor-made solutions for long-term ventilated adults and children on BiPAP (Bilevel Positive Airway Pressure) and CPAP (Continuous Positive Airway Pressure), non-invasive ventilation at home, where we provide tailor-made solutions at home for tracheostomy adults and children without ventilation, home ventilation and tracheostomy weaning whenever medically indicated, home cough assist management, home TPN (Total Parenteral Nutrition), home IV fluids, home IV antibiotics, home IV potassium, magnesium and other electrolyte infusions which goes along with home central line management, PICC (Peripherally Inserted Central Catheter) line management, Hickman’s line management, as well as port management at home. We are also providing PEG (Percutaneous Endoscopic Gastrostomy) and PEJ (Percutaneous Endoscopic Jejunostomy) tube management at home, nasogastric tube and nasojejunostomy tube management at home, IDC (Indwelling Catheter) and SPC (Suprapubic Catheter) management at home, as well as palliative care management at home. We are also providing Level 2 and Level 3 NDIS (National Disability Insurance Scheme) support coordination as well as TAC (Transport Accident Commission) case management.

 

This week I received an email from Richard, whose son was hit by a car about three weeks ago and has been in ICU ever since, ventilated with a breathing tube. Richard’s son is only 21 and normally uses a wheelchair because he was born with spina bifida and also has some learning disability.

 

Here is what Richard wrote to me:

 

“Hi Patrik, 

We have a son who is in a wheelchair. He got hit by a car about three weeks ago. He has been in ICU ever since, ventilated with a breathing tube. He responds, squeezes our hands, and nods his head. He did not pass the ventilator breathing trials. He breathes too fast. He does not have a tracheostomy at the moment. The doctors want to do a tracheostomy and a PEG tube for him to help him sit up and not worry about rupturing something. Also, my son had some learning disabilities because he was born with spina bifida. Please advise and help me to decide about these proposed procedures for my son. Will my son be safe and benefit from these? Will it be more difficult to come off the ventilator and tracheostomy because of the spine? Does he really need to have these done? If you think he should have a tracheostomy and PEG tube and cannot come off the ventilator, can you take him home with Intensive Care at Home? 

From Richard.”

 

Richard, thank you so much for trusting me with your son’s situation. I know how overwhelming it is to be handed two big medical decisions — a tracheostomy and a PEG tube — three weeks into an ICU admission while you are still absorbing the accident itself. Let me break down what is actually going on clinically, why your son’s medical team is likely recommending this, whether spina bifida changes the picture, and what your options are from here, including Intensive Care at Home.

 

Before I answer your question in detail, Richard, you may wonder what makes me qualified to answer questions like this for your son. I have worked in critical care nursing for over 25 years in three different countries, where I worked as a nurse unit manager for over five years in intensive care. I was part of setting up Intensive Care at Home services in Germany in the early 2000s, and then I brought the concept to Australia in 2012 which is how long we have been operating with Intensive Care at Home. I also run a consulting and advocacy service for families in intensive care, and you can find out more information at intensivecarehotline.com.

 

Understanding Your Son’s Clinical Picture

From what you have described, Richard, your son is neurologically responsive. He squeezes your hand and nods which is a genuinely encouraging sign after traumatic injury. What is keeping him in ICU is that he has not passed his spontaneous breathing trials yet. When the ventilator support is reduced, he breathes too fast also known as tachypnea rather than settling into an effective, sustainable breathing pattern.

 

Tachypnea on a breathing trial usually means one or more of the following is still going on:

• The muscles of breathing are weak or fatigued after weeks of ventilation
• There is ongoing lung injury or secretions
• There is pain or anxiety driving the fast respiratory rate
• There is a fluid or metabolic issue making the work of breathing harder than it should be

 

It does not automatically mean your son can never come off the ventilator. It means he is not ready yet  and three weeks is still relatively early in the ventilator weaning journey for a significant traumatic injury.

 

Why the ICU Team Is Recommending a Tracheostomy and PEG Tube

This is one of the most common decision points I help families work through, and it is rarely presented well by ICU teams under time pressure. Here is the clinical reasoning in plain language.

 

Number one: A breathing tube through the mouth known as an ETT (Endotracheal Tube) is only ever meant to be a short-term device. Left in for weeks, it increases the risk of vocal cord injury, damage to the trachea, and it requires heavier sedation just to keep a patient in ICU tolerating it.

Number two: A tracheostomy is generally more comfortable, needs less sedation, allows your son to potentially communicate, be more alert, participate in physiotherapy, and as you noted, sit upright without the risk of dislodging or rupturing something the way an oral tube can if he moves suddenly.

Number three: Lighter sedation and being able to sit up are actually two of the biggest drivers of successful ventilation weaning. Patients who are more awake, more mobile, and better nourished wean faster — not slower.

Number four: A tracheostomy, once weaned off the ventilator, will also allow your son to communicate more easily. He might be able to start talking again and may even be able to start eating and drinking orally faster — assuming he can swallow.

Number five: A PEG tube replaces a nasogastric tube for feeding. It is more secure and more comfortable long-term. There is a slightly lower risk of aspiration and it does not sit in the airway the way a nasogastric tube does — which can matter when someone is also trying to wean off a ventilator. However, the verdict on PEG versus nasogastric tube needs to be weighed up, and in my opinion the verdict is still not clear-cut.

Number six: Your son could potentially have a tracheostomy and continue with a nasogastric tube. Here is what the decision depends on. Two scenarios: the first scenario is if your son can wean off the ventilator and the tracheostomy while he is in ICU, a nasogastric tube will suffice. If he can wean off the ventilator but will need a tracheostomy for whatever reason, he may also need a PEG tube. If he cannot wean off the ventilator and cannot wean off the tracheostomy and needs ventilation and tracheostomy long-term, he will need a PEG tube. So it is more nuanced here in order to come to a conclusion. Some of it will depend on what the ICU team tells you about how likely it is that your son can wean off the ventilator.

 

A tracheostomy and a PEG tube at this stage are very often about creating the best possible conditions for weaning not about giving up on weaning. That is an important distinction the medical team may not have explained clearly to you.

 

Does Spina Bifida Make This More Difficult?

This is one of your central questions, so let me answer it directly. Spina bifida itself is not a lung disease and does not automatically make ventilator weaning harder. Respiratory muscle strength and airway reflexes in most people with spina bifida are unaffected by the condition itself. However, there is one thing I would want you to ask the treating team directly because it does change the picture for some people born with spina bifida.

 

Ask whether your son also has a Chiari II malformation or hydrocephalus common co-occurring conditions with spina bifida and whether there is any history of central sleep apnea, abnormal breathing control, or brain stem involvement. In a small number of people with spina bifida, brain stem level involvement can affect the automatic drive to breathe, separate from muscle strength. This is worth specifically asking about not because it is likely, but because it is one of the factors that could genuinely make his weaning trajectory different, and I do not want you to be blindsided by it later.

 

The learning disability itself does not affect his physical ability to wean off a ventilator, though it may affect how the team communicates with him. It is worth asking that his rehabilitation and communication needs are built into his care plan from day one — including once he has a tracheostomy in place.

 

What Your Treatment Options Actually Are

Because you asked me directly, Richard, does your son really need to have these done? Here is how I would frame the decision with what I know about your son’s situation.

Number one: If he continues to fail breathing trials, staying on an oral breathing tube for many more weeks carries real risks, airway injury, prolonged heavy sedation and it becomes a self-fulfilling problem where the tube itself makes weaning harder.

Number two: A tracheostomy is not a step backward or a sign he will not come off the ventilator. For a young man with a serious traumatic injury, this is very commonly the platform that gets weaning back on track.

Number three: A PEG tube, like I said, is not necessarily a step backward. It really depends on whether he can wean off the ventilator and the tracheostomy. If that is not possible, I would recommend he needs a PEG tube. If they think he can wean off the ventilator within the next three to four months, a nasogastric tube would be my recommendation.

Number four: Before consenting, ask the team to walk you through what is reversible — pain control, sedation levels, fluid balance, secretion management — and whether physiotherapy and mobilization have been maximized. If those have not been fully optimized yet, it is fair to ask the right questions and request a short, defined trial of that before proceeding — but do not let that delay stretch on indefinitely.

Number five: Ask specifically what the ventilator weaning plan looks like after the tracheostomy is placed. A tracheostomy without a structured weaning plan is how people get stuck on a ventilator unnecessarily for long periods of time — and depending on that answer, you should also make the decision about a PEG tube or leaving the nasogastric tube in place. You can leave a nasogastric tube in place for up to six months. Keep that in mind.

My clinical view, based on over 25 years of critical care nursing experience in hospitals and with Intensive Care at Home: for a responsive 21-year-old, three weeks post-injury, a tracheostomy is very likely the right next step — to protect his airway, reduce sedation, get him sitting up and engaged in rehabilitation, and give weaning the best possible chance — provided the team commits to an active weaning plan, not just a tracheostomy and a wait-and-see approach.

Regarding the PEG tube: find out what the team’s predictions are. How long will it take for him to wean off the ventilator? If they think it is not possible to come off the ventilator — or if they think it is possible but he needs a tracheostomy long-term — then a PEG tube is the right decision. But if they think he can wean off the ventilator in the next one to four months, a nasogastric tube is fine.

 

Whatever you decide, start requesting copies of your son’s medical records now — all of them. His doctor’s notes, his specialist reports, his nursing notes, his pathology results which include blood gas results from each breathing trial, ventilation settings, chest imaging, and the MDT (Multidisciplinary Team)’s documented weaning plan, CT scan, MRI scans, chest X-rays including all the reports, ultrasound reports, ventilation charts, observation charts like vital signs — everything. Leave no stone unturned, because you are entitled to this information and it puts you in a position to ask informed questions. Get a second opinion if you want one, and hold the team accountable to an actual plan rather than an open-ended tracheostomy with no clear endpoint. Families get the best outcomes when they stay engaged with a paper trail from week one — not after something has gone wrong.

 

How I Can Help You Make Decisions with Confidence

I can help by looking at medical records and consulting with you, because this is exactly what I help families work through every week — drawing on my ICU nursing background rather than a hospital’s internal pressures, and making sure your son’s interest is paramount, not the hospital’s interest.

 

If you would like to go through your son’s specific case and all of his medical records, me and my team are here to help. Call me directly on one of the numbers on the top of our website at intensivecareathome.com, or book a call with me via the Schedule Appointment button on the website, or email me at [email protected]. If you are in Australia, you can call me directly on my mobile on 0410 942 230 — that is again 0410 942 230. Rest assured I read all emails, especially around inquiries.

 

If Your Son Needs Intensive Care at Home

One of your questions was: if he needs a tracheostomy and stays ventilator-dependent, can we bring him home? If your son does end up with a tracheostomy and continues needing ventilation support for longer than expected, please know that ICU is not the only place he can safely be cared for. ICU is often not the best place for his long-term rehabilitation, his long-term health, and definitely not for his quality of life and it is not the best option for your family’s quality of life either, because I am sure you are spending day and night in ICU to be with your son.

If Intensive Care at Home is what is needed, please rest assured that Intensive Care at Home is Australia’s only third-party accredited Intensive Care at Home nursing service — ISO 9001:2015 — including NDIS registered. You can see the full details of our accreditation and quality framework at intensivecareathome.com/accreditation-quality.

 

Every plan of care we build is grounded in evidence-based practice. I encourage you to read through our evidence-based Mechanical Home Ventilation Guidelines so you can see exactly how tracheostomy and ventilation weaning is safely managed outside of ICU by our team of critical care registered nurses in the community. We employ hundreds of years of critical care nursing experience combined in the community, and we are currently operating all around Australia in all major capital cities, all regional and rural areas, and in all states and territories. We can find staff in pretty much any location where it is needed.

 

If you are watching or reading this and you are in the US, the UK, Canada, or India wherever you are please reach out to us as well. We can help you there too.

The reason I am outspoken about having critical care nurses at home for long-term ventilation and tracheostomy is because I have seen what happens when things go wrong. On 8 December 2025, a young man named Noah Johnston died after his tracheostomy dislodged while no critical care registered nurse was present at home. That is precisely why we never downgrade tracheostomy and ventilation care to general registered nurses, to enrolled nurses, let alone to disability support workers. Think of it like flying an airplane, you would not want the cabin crew to fly the airplane instead of the pilot. You want the pilot in the cockpit. For anything that is Intensive Care at Home related, whether it is invasive ventilation with tracheostomy, non-invasive ventilation without tracheostomy like BiPAP and CPAP, or tracheostomy care without ventilation, the pilot needs to be a critical care registered nurse 24 hours a day. It is non-negotiable, because if it is negotiable, patients die — like Noah Johnston.

Also keep in mind that we provide NDIS Level 2 and Level 3 support coordination and TAC case management, which may be directly relevant to your son’s situation given how he was injured and given the complexity of his case with the spina bifida, learning disability, and now a traumatic injury. Coordinated, one-team NDIS and TAC support at home could make a real difference to his rehabilitation and his quality of life.

 

The Bottom Line

Richard, a tracheostomy and PEG tube are very likely the right move to give your son’s weaning the best chance  to protect his airway and get him sitting up and engaged in rehab — not a sign that he has failed or that he will not come off the ventilator. Ask the ICU team for a clear weaning plan alongside the tracheostomy. Keep requesting his medical records and specifically ask about Chiari II malformation and brain stem involvement so there are no surprises. And if the road home takes longer than the hospital first suggests, Intensive Care at Home is here. We are third-party accredited, ISO 9001:2015 accredited and NDIS registered. It is CCRN (Critical Care Registered Nurse) led care whenever you are ready, and we can help you with the funding as well.

 

With all of that said, with Intensive Care at Home, we are currently sending our critical care nurses into the home 24 hours a day. Therefore, we are providing a genuine alternative to long-term stay in intensive care for:

• Ventilation
• Tracheostomy
• Home BiPAP (Bilevel Positive Airway Pressure) and CPAP (Continuous Positive Airway Pressure)
• Tracheostomy care without ventilation
• home TPN (Total Parenteral Nutrition)
• Home IV potassium
• Home IV magnesium
• Home IV antibiotics
• Home IV fluids

 

We’re providing:

 

• Cough assist management at home
• Ventilation weaning management at home
• central line, PICC (Peripherally Inserted Central Catheter) line, Hickman’s line as well as port management at home
• nasogastric tube, nasojejunostomy tube, PEG (Percutaneous Endoscopic Gastrostomy), PEJ (Percutaneous Endoscopic Jejunostomy) tube management at home
• IDC (Indwelling Catheter) and SPC (Suprapubic Catheter) management at home
• Palliative care services at home

 

We’re also sending our critical care nurses into the home for emergency department bypass services. We have done so successfully as part of the Western Sydney Local Health District’s In Touch program, saving approximately $2,000 per patient that we keep at home instead of them going into an emergency department.

That also means we’re in a position to cut the cost of an ICU bed by around 50%. An intensive care bed costs between $5,000 to $10,000 per bed day depending on location. Intensive Care at Home costs approximately 50% of that, and we’re freeing up the most sought-after bed in the hospital, which is the ICU bed. Most importantly, we’re improving the quality of life for patients and their families, which is a win-win situation for all stakeholders.

 

Our Coverage and Accreditation

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 an NDIS approved service provider all around Australia, TAC (Transport Accident Commission) and WorkSafe in Victoria as well as the Department of Veterans Affairs all around Australia.

 

We’re also ISO 9001:2015 accredited. Our clients and we as a service provider have also received funding through public hospitals, private health funds as well as departments of health.

 

We are the only service provider in Australia that has achieved third-party accreditation for Intensive Care at Home nursing in 2025. We have been achieving this high level of accreditation since 2012. No other provider in Australia has achieved the Intensive Care at Home level of accreditation in the community and has created more intellectual property when it comes to Intensive Care at Home nursing than we have.

 

This puts us in a position to employ hundreds of years of critical care nursing experience combined in the community. No other service provider in 2025 employs a higher skill level in the community than we do. And that enables us to look after the highest acuity adults and children in the community in Australia safely.

 

If You Need Help

If you’re at home already and you’re watching this or you’re stuck in an ICU and you realize that you don’t have the right level of support, I can give you many examples where we helped clients with funding, how we advocate for funding. We had to advocate successfully for funding from our first case study to many other case studies where we had to advocate successfully for funding with the right evidence of course because it is crystal clear that disability support workers for example or registered nurses without ICU experience cannot look after ventilated clients at home whether adults or children with or without a tracheostomy and it’s simply dangerous and negligent.

 

There are plenty of examples where clients with support worker models or even RN (registered nurse) models without ICU experience have died at home and I have evidence to back up everything that I’m saying here because it’s a bit like flying the airplane with a cabin crew instead of the pilot and it could simply be deadly.

 

This can be avoided by having simply 24-hour critical care nurses at home because our clients are at high risk of medical emergencies or worse without critical care nurses 24 hours. This is actually also evidence-based in the community and is documented in our evidence-based Mechanical Home Ventilation Guidelines on our website at intensivecareathome.com.

 

Think about it: in an intensive care unit in a hospital, you wouldn’t have support workers or general registered nurses looking after a critical care patient on a ventilator with a tracheostomy. So why would anyone in their right mind do that in a home care environment where there are fewer resources?

 

Clients that have found us have been at home long-term predictably and permanently with critical care nurses. Their alternative would have been to either die or stay in ICU long-term, and our clients don’t go back to ICU. They stay at home permanently and predictably and the insurance bodies save half of the cost of an ICU. But it’s a win-win situation all around.

 

We can do the same for you if you’re stuck in ICU or if you’re not safe at home, which includes the advocacy for funding and the network that goes along with it. We have always successfully advocated for our clients or we have the network to successfully advocate for you and for your family member, otherwise we wouldn’t be in business. The same again is applicable for those stuck in an ICU which is similar to many of our, if not most of our cases.

 

Our Support Coordination Services

This is also why we are providing Level 2 and Level 3 NDIS support coordination. We have a team of experienced NDIS support coordinators, and they have a wealth of knowledge. We’re also providing TAC case management and WorkSafe case management in Victoria with Lucy McCotter.

 

If you’re an NDIS support coordinator or a case manager or a social worker from another organization or a hospital 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 how to advocate for it, what evidence to provide, I encourage you to reach out to us as well. We have the network to make that happen. We will help you with the right level of funding and with the right level of advocacy.

 

We’re also providing NDIS specialist nursing assessments done by critical care nurses with a legal nurse consulting background.

 

Join Our Team

If you are a critical care nurse and you’re looking for a career change and you want to join a very progressive, dynamic, successful, and high-performing team of critical care nurses in the community, we are employing hundreds of years of critical care nursing experience combined.

 

If you’re looking for a career change, we’re currently hiring for jobs for critical care nurses in Melbourne, Sydney, Brisbane, Albury-Wodonga, Bendigo, Geelong, Warragul, and also in Wyelangta in Victoria.

 

If you have worked in critical care nursing for a minimum of two years, adult ICU, pediatric ICU, ED and you have already completed a postgraduate critical care nursing qualification, we will be absolutely delighted hearing from you.

 

I have a disclaimer though: Because we are offering tailor-made solutions for our clients which includes regular staff, our clients do also want the same staff coming over and over again because they are so vulnerable and so special. That’s why we need regular, reliable staff.

 

If you’re looking for agency work where you can come and go, this will not be 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 and you’re really keen on building relationships with us and with our clients. Reliability is also a must.

 

For Medical Professionals and Healthcare Executives

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

 

We can also help you eliminate your bed blocks in your ICU and in your 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 to 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 is so much more cost-effective than what you’re paying for in ICU and ED settings, and you get the same level of care and simply more patient and family satisfaction because you also want to partner with your consumers.

 

If you are a hospital executive watching this, we can help you free up your ICU and ED beds.

 

International Support

If you’re in the U.S. or in the UK and you’re watching this and you need help, we want to hear from you as well. We can help you there privately with one-on-one consulting and with hiring nurses privately.

 

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 [email protected].

 

If you like my videos, click the like button, 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, and share this video with anyone who has a family member in intensive care long-term or needs to see this.

Thank you so much for watching.

 

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

 

Take care for now.