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My name is Patrik Hutzel from intensivecareathome.com, where we provide tailor-made solutions for long-term ventilated adults and children with tracheostomy at home with critical care nurses 24 hours a day, where we provide tailor-made solutions for long-term ventilated adults and children at home on BiPAP (Bilevel Positive Airway Pressure) and CPAP (Continuous Positive Airway Pressure) ventilation with critical care trained nurses 24 hours a day, where we provide tailor-made solutions for tracheostomy adults and children at home without ventilation with 24/7 critical care registered nurses, where we provide ventilation and tracheostomy weaning at home when medically appropriate, where we provide cough assist management at home, Home TPN (Total Parenteral Nutrition), home intravenous (IV) fluids, home IV antibiotics, home IV potassium, magnesium, and other electrolyte infusions.

 

We also provide central line, PICC (Peripherally Inserted Central Catheter) line, Hickman’s line, port management at home. We provide indwelling catheter (IDC), suprapubic catheter (SPC), PEG (Percutaneous Endoscopic Gastrostomy) tube, PEJ (Percutaneous Endoscopic Jejunostomy) tube, as well as nasogastric tube and nasojejunal tube management at home.

 

We also provide palliative care services at home when appropriate. We also provide level two and level three National Disability Insurance Scheme (NDIS) support coordination, as well as Transport Accident Commission (TAC) and WorkSafe case management.

 

Today, I have a question from Betty, who has her five-year-old granddaughter in ICU.

 

If you need help right now, if your child or grandchild is in ICU and you need to understand what is happening or you want to explore bringing them home on a ventilator with or without tracheostomy ventilation, or tracheostomy without ventilation, talk to us. You can talk to us if you go to our website at intensivecareathome.com.

Need help right now? If your child or grandchild is in ICU and you need to understand what’s happening, or you want to explore bringing them home on a ventilator, talk to us. Call 041 094 2230 (within Australia) or email via https://intensivecareathome.com

If you contact us on one of the numbers on the top of our website, or you can call me directly, if you are in Australia, on 041 094 2230. That is again 041 094 2230.

When you go to our website, you can also book a call with me through the Schedule appointment button, or you can send me an email to info@intensivecareathome.com.

 

Currently, with Intensive Care at Home, we are operating all around Australia in all states and territories. If you are overseas, United States, Canada, United Kingdom, India, or wherever you are, please reach out to us as well. We can help you too.

 

Here is a question from Betty.

 

“Hi Patrik,

 

My granddaughter, who is a five-year-old girl, has Trisomy 18 with a large VSD. VSD is a ventricular septal defect and pulmonary hypertension. She was admitted to ICU unresponsive after a seizure and not breathing, and she was intubated and ventilated with heavy sedation and paralysis. She was diagnosed with pneumonia, rhinovirus, and a UTI. After two weeks, she had a tracheostomy and is still sedated with Precedex, also known as dexmedetomidine, and clonidine, plus fentanyl as needed.

 

They have tried weaning her off the ventilator several times without success. Her pneumonia has cleared, and they are moving her out of ICU. The seizures were never resolved. She has an episode every time they reduce her sedation. She has just started clobazam and valproic acid. She is fed continuously through a PEG tube, and she has been on an EEG for 48 hours.

 

Will she be able to come off the ventilator? How long is it safe to remain on the ventilator? Does that mean she must remain sedated? Could she come home ventilated with Intensive Care at Home? What are the chances of a meaningful recovery?

 

From Betty.”

 

These are some of the most important questions a family can ask. Let us go through them one by one.

 

Please keep in mind that this is general information only to help you ask the right questions. It is not medical advice for your grandchild. Only her treating team, who can examine her and see her results, can give that.

 

Before I answer Betty’s questions in more detail, you might be wondering what makes me qualified to answer questions like that for Betty.

 

I have worked in critical care nursing for over 25 years in three different countries, where I worked as a nurse manager for over five years in intensive care. I was part of setting up Intensive Care at Home nursing services in Germany in the early 2000s. Big shout-out to Brambring and Jaschke here, and to Jurg and Kristoff. As I went on my nursing career in ICU, I worked in the United Kingdom, worked in Australia, and then started to set up Intensive Care at Home in Australia in 2012, as I saw a big gap in the market here, and that is how long we have been operating here in Australia and all states and territories since 2012. I also run a consulting and advocacy service for families in intensive care at intensivecarehotline.com.

 

So, what is going on clinically with your granddaughter with Trisomy 18 on a ventilator?

 

When I read a situation like this, I look at the whole picture because there is not a problem here. There are several, and they all influence each other. Trisomy 18 is number one, also known as Edwards syndrome.

 

Children with Trisomy 18 often have low muscle tone, hypotonia, a tendency to central apnea, pauses in breathing that come from the brain rather than the airway, upper airway problems, reflux, and a higher risk of aspiration. All of these make breathing on their own much harder. A large VSD with pulmonary hypertension. A ventricular septal defect (VSD) is a hole between the two pumping chambers of the heart. A large VSD sends extra blood to the lungs, and over time, the blood pressure in the lungs rises. That is pulmonary hypertension.

Low oxygen levels, high carbon dioxide levels, pain, crying, and agitation can all make pulmonary pressures spike. This is one of the reasons ICU teams are careful when they lighten sedation.

 

Number three, a seizure that led to respiratory arrest. Your granddaughter came in unresponsive and not breathing. Seizures can stop breathing directly, and the medications used to stop seizures can also suppress breathing.

 

Number four, infection. Pneumonia, rhinovirus, and a UTI on top of everything else. The good news is that the pneumonia has now cleared.

 

Number five, a tracheostomy. This is actually a step forward. A tracheostomy is far more comfortable than a breathing tube in the mouth, which usually means a child needs much less sedation to tolerate it.

 

Number six, ongoing sedation and new seizure medications. Dexmedetomidine, Precedex, clonidine, fentanyl, and now clobazam and valproic acid.

 

Your next question, Betty, was why is ventilator weaning failing in a child with Trisomy 18?

 

Weaning failure almost always has more than one cause. These are the questions I would want answered.

 

Number one, is it the sedation? Children who have been on sedation for weeks can be too drowsy to breathe strongly, or their breathing drive is blunted. Clobazam is a benzodiazepine, and it can add to drowsiness and increase saliva and secretions, both relevant to weaning.

 

Number two, is it the heart and lungs? With a large VSD and pulmonary hypertension, the work of breathing off the ventilator may simply be too much for the heart right now. Ask cardiology, what does the latest echocardiogram show? Which way is blood flowing across the VSD? Is she on any medication for pulmonary hypertension? Is the VSD repairable?

 

Number three, is it her breathing drive? Central apnea is common in Trisomy 18. If her brain is not reliably telling her to breathe, she may need ventilation at least at night or during sleep, possibly long term.

 

Number four, is it muscle weakness? Weeks in ICU, paralysis early on, and low muscle tone all weaken the breathing muscles. Strength takes time to rebuild. When I say paralysis early on, I mean that sometimes when adults or children are ventilated with a breathing tube and they are fighting against the ventilator, they need chemical paralysis.

 

What that means is they are getting paralyzing agents so that the body is actually paralyzed so that the machine can do the ventilation, and then it takes even longer for patients to wake up, including potentially exacerbated muscle weakness.

 

Number five, is it secretions and airway? Thick secretions, reflux, aspiration, and floppy airways, tracheomalacia or bronchomalacia, can all cause weaning to fail.

Number six, is it nutrition? Breathing muscles need fuel. Ask the dietician whether she is getting a full calorie goal on the slower continuous feed.

 

Next, are the episodes seizures or sedation withdrawal? This, to me, is the single most important question in her case. She has an episode every time the sedation is reduced.That could be seizure activity breaking through, but it could also be iatrogenic withdrawal, the body reacting to coming off medications it has been on for many weeks.

 

Dexmedetomidine and clonidine both belong to the same family of drugs, alpha-2 receptor agonists, and fentanyl is an opiate. After prolonged use, reducing them too quickly can cause agitation, i.e., a racing heart, high blood pressure, tremors, sweating, and movements that can look a lot like seizures.

 

Many pediatric ICUs use a withdrawal score such as the WAT-1 to track this. That is why the 48-hour electroencephalogram (EEG) matters so much. Ask the neurology team directly: when she had an episode during the EEG, did the EEG show seizure activity at the same time? If yes, the seizures need better control. If no, the team may be dealing with withdrawal, and a slower structured taper may be the answer. The treatment is completely different.

 

So this question is worth asking clearly.

 

Also ask how the new medications are being monitored. Valproic acid, for example, usually requires blood tests for liver function, platelets, and sometimes ammonia levels. These are reasonable questions for any family to raise.

 

Your next question, Betty, was will she be able to come off the ventilator? Betty, nobody can promise that, and I will not either. What I can tell you is that there is a spectrum of outcomes.

Number one, some children wean completely once infection, sedation, and seizures are under control.

Number two, some children wean during the day but need ventilation at night or when unwell.

Number three, some children, especially those with significant heart disease or central apnea, need long-term ventilation through their tracheostomy. Weaning with a tracheostomy is usually a gradual process measured in weeks or months, not days.

 

Here is something many families do not realize. Ventilation weaning does not have to finish in hospital. In the right circumstances, with the right team, weaning can continue at home. That was one of your questions.

 

Can your granddaughter go home with Intensive Care at Home? We will come to that in a minute.

 

Next, how long is it safe for a child to stay on a ventilator? This is a common worry.

 

So I want to address it directly.

 

With a breathing tube in the mouth, ICU teams generally want to move on within a couple of weeks because of the risk of airway damage and infection. That is exactly why she had the tracheostomy. With a tracheostomy, the situation changes. Children and adults can be safely ventilated through a tracheostomy for months and years.

 

Many live at home with long-term ventilation, go outside, see family, and in some cases attend school or kindy. There are still risks: infection, blocked or displaced tubes, equipment failure, which is exactly why the level of skill of the people caring for her matters so much, which is where Intensive Care at Home is coming in because we exclusively work with critical care registered nurses and ICU nurses.

 

Again, I will come to that in a minute. Your next question was, does being on a ventilator mean she must stay sedated? No. Being on a ventilator does not in and of itself require sedation, especially with a tracheostomy. Many ventilated children at home are awake, interacting, and on little or no sedation at all.

 

In her case, the sedation is being driven by the episodes, not by the ventilator. So the real question is, can the seizures be controlled, and can the sedation be tapered safely? Once that is sorted out, the ventilator question often becomes clearer as well. Your next question was, what are the chances of a meaningful recovery with Trisomy 18? Again, I want to be honest and respectful here.

 

Trisomy 18 is a serious condition, and historically only a minority of babies survived their first year. Your granddaughter is five. That is amazing. She has already lived beyond what many textbooks would have predicted, which tells you she is a fighter and that she has been well cared for.

 

Meaningful recovery means different things to different families. For some, it means coming off the ventilator and the tracheostomy. For others, it means getting back to her baseline, being at home, recognizing family, being comfortable, enjoying her life.

 

I would encourage you to ask the treating team: what was her baseline before this admission, and what do you realistically think we can get back to? Then ask whether a palliative care team may be appropriate to be involved alongside active treatment, not as giving up, but to make sure comfort, goals, and quality of life are part of every decision and discussion.

 

Families have the right to be part of these decisions. You know her best. I almost say this in almost every article because it matters greatly when you have the medical records, the EEG reports, the echocardiograms, the medication charts, the ventilator settings, the weaning attempts, the pathology results, the lab results, the doctors’ notes, the nursing notes, the vital sign charts, the specialist reports, the fluid balance charts, and you name it.

 

You can see exactly what is happening instead of relying on snippets from ward rounds. Once you have all the medical records, you can then also get a second opinion, but it will also help you with funding. When it comes to NDIS funding or any other funding bodies, it will help you with all aspects of the care of your granddaughter.

 

In most countries, including Australia, patients and their legal guardians have the right to access medical records. Ask the hospital’s health information or medical records department how to get access to them. Also, keep a simple diary. Weaning attempts, how long she lasted, what the settings were, and when episodes happened in relation to medication changes.

 

Next, bring your questions to a family meeting in writing and ask for the answers in writing. Next, you asked if a child with a tracheostomy can come home on a ventilator in Australia. Absolutely yes.

 

If you live in Australia, a ventilated child with a tracheostomy can potentially come home with Intensive Care at Home with 24/7 nursing care from critical care registered nurses.

 

We work alongside the hospitals, pediatric and long-term ventilation teams to plan a safe discharge.

 

Here at Intensive Care at Home, we are Australia’s only third-party accredited Intensive Care at Home nursing service.

We are accredited to International Organization for Standardization (ISO) 9001:2015 accreditation standards and also to NDIS standards.

You can see our accreditation on our website at intensivecareathome.com/accreditationquality.

 

Our care is built on our evidence-based Mechanical Home Ventilation Guidelines, which set out how ventilated patients with tracheostomies are cared for safely at home, which is exclusively with 24/7 ICU-based, ICU-trained nurses.

You can read our mechanical home ventilation guidelines on our website at intensivecareathome.com.

 

Why critical care registered nurses or ICU nurses?

 

Think of it like flying a plane. When everything is calm, it might look like anyone could sit in the cockpit, including the cabin crew. But when there is turbulence, a blocked tracheostomy tube, a seizure, a sudden drop in oxygen, a pulmonary hypertension crisis, a ventilation failure, you need a pilot who has been trained for exactly that moment.

 

For a child with Trisomy 18, a heart defect, pulmonary hypertension, seizures, and a tracheostomy on a ventilator, those moments can come without warning. Think about it. You want to go home from ICU directly. You cannot just cut off the supply of ICU nurses when leaving ICU.You need to continue with the same level of skill at home.

 

What we provide at home includes 24/7 care by critical care registered nurses for invasive ventilation with tracheostomy, BiPAP (Bilevel Positive Airway Pressure), Home CPAP (Continuous Positive Airway Pressure), and tracheostomy care without ventilation.

 

Home ventilation weaning where clinically appropriate and agreed with the treating team.

 

PEG feeding management, nasogastric and nasojejunal tube feeding management, seizure monitoring and medication management, discharge planning with the hospital, and NDIS support coordination.

 

We support families all around Australia, Victoria, New South Wales, Queensland, South Australia, Western Australia, Australian Capital Territory (ACT), Tasmania, funded through NDIS, TAC, WorkSafe, DVA, private health insurance, departments of health, hospitals, or privately.

 

In our experience, home care costs around half of what an ICU bed costs, and many families tell us that being at home matters enormously to them. Families always have the choice and control over which provider they use. We are happy to talk through whether they are the right fit. If you are living outside of Australia, our home nursing service operates currently in Australia in all states and territories, but our consulting and advocacy service supports families worldwide.

So what are frequently asked questions?

 

Number one, can a child with Trisomy 18 be weaned off a ventilator? Some can, some partially wean, for example, off during the day, and some need long-term ventilation. It depends on your granddaughter’s heart and lungs, breathing drive, muscle strength, seizure control, and sedation.

 

How long can a child stay on a ventilator with a tracheostomy?

With a tracheostomy, children can be ventilated safely for months or years, including at home with skilled nursing care. Does a ventilated child need to be sedated? Not usually. A tracheostomy is well tolerated, and many ventilated children at home are awake on little or no sedation.

 

Can withdrawal from dexmedetomidine or Precedex, clonidine, or clonidine look like seizures?

 

It can cause agitation, tremor, and abnormal movements that can be mistaken for seizures, and EEG during an episode helps tell the difference.

 

Why does pulmonary hypertension make weaning harder? Breathing off the ventilator increases the workload on the heart, and low oxygen or high carbon dioxide can raise lung pressures further.

 

Can a ventilated child go home in Australia? Yes, absolutely. Intensive Care at Home provides 24/7 ICU-trained and critical care registered nurses at home 24/7 for ventilated children and adults across all states and territories.

 

Another frequently asked question is, does the NDIS fund home ventilation nursing for children? The NDIS can fund disability-related nursing supports for eligible participants. Each plan is assessed individually, and our support coordinators can help families navigate the process.

 

The bottom line is this, Betty, your granddaughter has a tracheostomy. Her pneumonia has cleared, and she is moving out of ICU. Those are real steps forward. The key questions now are whether her episodes are seizures or withdrawal, how her heart and pulmonary pressures are affecting weaning, and what a realistic goal looks like for her.

 

A ventilator does not have to mean sedation, and it does not have to mean a life in hospital. If you need help making sense of it all, or you are in Australia and want to explore bringing a ventilated child home, please get in touch with me or with us at intensivecareathome.com.

 

Call us on one of the numbers on the top of our website or book a call with me, or you can call me directly on my mobile phone 041 094 2230.

 

That is again 041 094 2230, or send me an email to info@intensivecareathome.com.

 

If you are international, United States, Canada, United Kingdom, India, call us on one of the numbers on the top of our website.

 

If you have a family member in intensive care and you need advocacy, you can check out our sister site at intensivecarehotline.com.

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.