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Can My Daughter Breathe Longer Off the Ventilator After Spinal Cord Injury?

My name is Patrik Hutzel from intensivecareathome.com, where we provide tailor-made solutions for long-term ventilated adults and children with tracheostomies, where we provide tailor-made solutions for long-term ventilated adults and children BIPAP (Bilevel Positive Airway Pressure) and CPAP (Continuous Positive Airway Pressure) without tracheostomy, tracheostomy care at home without ventilation, home ventilation weaning, home cough assist management, home TPN (Total Parenteral Nutrition), home IV (intravenous) potassium, home IV magnesium, home IV fluids, home IV antibiotic infusions, central line, PICC (peripherally inserted central catheter) line, Hickman’s line, port management at home, IDC (indwelling catheter), SPC (suprapubic catheter), PEG (Percutaneous Endoscopic Gastrostomy) tube, PEJ (percutaneous endoscopic jejunostomy) tube, nasogastric tube, nasojejunostomy tube management at home, as well as palliative care management at home.

Now, today I have a question from Debbie, and this is something that comes up quite often when we’re dealing with spinal cord injuries, particularly high cervical spinal cord injuries like C2 or C3. So Debbie is asking:

“Hi Patrik,

My daughter is 30 and has been on a ventilator and tracheostomy for 5 months in hospital due to a C2-C3 spinal cord injury. She’s now able to breathe for 5 minutes at a time off the ventilator. Do you have any suggestions that may get her off it for a longer period? She does seem fine after 5 minutes, but then gets breathless, but I’m not sure how long we should leave her off the ventilator. Also, how long should we leave her in ICU before going home with Intensive Care at Home?”

From Debbie.

Debbie, thank you so much for your question.

This is absolutely critical and I’m going to break this down for you because there’s a lot to unpack here and just by the way, we are looking after a number of spinal injury clients in the community and have looked after a number of spinal injury clients in the community, C2, C1, C3, 4, you know, over a decade now, and obviously I have worked in critical care nursing in hospitals as well for 20 years, before going into Intensive Care at Home.

So, first things first, C2 to C3 spinal cord injury is a high cervical injury and what that means is the nerve supply to the diaphragm and the accessory muscles of breathing can be significantly affected or even completely lost. The diaphragm is innervated by the phrenic nerve which comes from C3, C4 and C5 nerve roots. With the C2, C3 injury, there’s potential for some diaphragm function, but it’s often compromised. Which is exactly why your daughter has been ventilator dependent for the last 5 months.

Now the fact that she can breathe for 5 minutes off the ventilator is actually a really positive sign. This tells me that she has some respiratory muscle function, and that’s something we can potentially build on. So, with gradual weaning, let’s look at the key to success. Here’s what you need to understand about ventilator weaning in spinal cord injury patients. This is a marathon, not a sprint. And the approach should be gradual, systematic, and closely monitored. You don’t want to push too hard, too fast, because that can actually set your daughter back, but. You also don’t want to be too conservative because regular exercise of the respiratory muscles is essential for building endurance and strength. My recommendations for extending time off the ventilators.

Number one, start with a structured weaning protocol. If she’s currently managing 5 minutes, I’d suggest working with her medical team to implement a structured weaning schedule. This might look something like multiple short sessions throughout the day, rather than one long session, gradually increasing the duration by 1 to 2 minutes every few days, monitoring her oxygen saturation, heart rate, respiratory rate, and most importantly, how she feels. Having clear criteria for when to reconnect back to the ventilator.

Number 2, monitor key signs and symptoms. You mentioned she gets breathless after 5 minutes. That’s your body’s way of saying, I need support, but here’s what you should be watching for. Oxygen saturation dropping below 90 to 92%. Respiratory rate increasing significantly above 30 breaths per minute. Heart rate increasing or becoming irregular. Visible signs of distress, accessory muscle use, nasal flaring anxiety, change in mental status or confusion, sweating or pale appearance, if any of these occur, get her back on the ventilator immediately.

Number 3, consider the time of the day. Respiratory muscle fatigue is real. Your daughter might tolerate weaning better at certain times of the day when she is well rested. Morning sessions often work better than late afternoon or evening when fatigue simply has set in.

Number 4, optimized nutrition and overall health. Respiratory muscle function requires adequate nutrition, particularly protein. Make sure she’s getting proper nutritional support because malnutrition can significantly impair weaning success.

Number 5, consider respiratory muscle training. Some centers use specific respiratory muscle training devices or techniques. This might include incentive spirometry or other devices that help strengthen the respiratory muscles. Talk to a respiratory therapist about what’s available.

Number 6, address secretion management. With a tracheostomy, managing secretions is crucial. If she’s struggling with secretions, that will make breathing off the ventilator much harder. Make sure she has regular suctioning protocols, adequate hydration, chest physiotherapy if needed, potentially. Mucolytic medications if secretions are thick.

Now you also asked Debbie how long you should leave your daughter off the ventilator. This is the multi-billion-dollar question really, isn’t it? Here’s my answer. There’s no one size fits all duration. The key is to push her just, just enough to build respiratory muscle endurance, but not so much that you exhaust her to the point where she needs hours or potentially even days to recover. If she’s fine for 5 minutes and then gets breathless, I’d suggest staying at 5 minutes for a few sessions, then gradually increasing. The goal is to find that sweet spot where she’s working her respiratory muscles, but not to the point of complete exhaustion.

A good rule of thumb, if it takes her more than 30 to 60 minutes to fully recover after a weaning attempt, you might be pushing too hard. Also, look at position of your daughter, for example, if she is sitting up in bed, that may work only for 5 minutes, maybe if she’s sitting in a chair, she might be able to last for 10 minutes. So positioning is really important, mobilization is really important. Physiotherapy is really important. All of that plays a big role.

Now, let’s look at the second part of your question. When should you transition your daughter home with Intensive Care at Home, and this is absolutely critical and it’s something we obviously specialize in at Intensive Care at Home. You don’t need to wait until she’s completely off the ventilator to go home. In fact, staying in ICU longer than necessary can actually be detrimental because risk of hospital acquired infections increase. Quality of life is poor. Psychological impact on both patient and family, much higher costs. Limited mobility and rehabilitation opportunities. Now, when can you consider going home? Based on our evidence-based Mechanical Home Ventilation Guidelines, here’s what needs to be in place.

Number one, she needs to be medically stable, stable ventilator settings that can be managed at home, no ongoing acute medical issues requiring high ICU level monitoring such as inotropes or vasopressors, stable tracheostomy, and we also need to do 2, a home environment assessment, suitable space in the home electrical supply and backup power, room for equipment and caregivers.

Number 3, equipment and supplies, home ventilator different from ICU ventilator, oxygen supply if needed, suction equipment, monitoring equipment, emergency backup equipment, adequate supplies of tracheostomy tubes, suction catheters.

Number 4, caregiver training. You and your family need comprehensive training in ventilation management, tracheostomy and emergency tube changes, suctioning techniques, emergency procedures, basic troubleshooting, when to call for help. And that’s all done by us, of course, because, you know, you can’t be without 24-hour intensive care nurses at home.

Number 5, professional support team 24/7. Intensive care nursing, respiratory physician support, medical doctor oversight, emergency contact system, equipment supplies, and, and technicians, we can provide all of that.

Number 6, financial and insurance considerations, home ventilation coverage, nursing care coverage, equipment and supplies. This varies significantly or can vary significantly based on location and condition, but the reality is someone is paying for the ICU bed which is $5,000 to $6,000 per bed day and because of that, someone is interested in paying 50% of that, which is how much Intensive Care at Home costs. ICU bed is between $5,000 to $10,000 per bed day. Intensive care at home is 50% of that.

The reality is that unfortunately with C2 or C3 spinal injury, your daughter will most likely be ventilator dependent for a long time, if not for the rest of her life, but that doesn’t mean she can’t be weaned off the ventilator gradually to have time off the ventilator at least for parts of the day.

So, here’s what most families don’t realize: your daughter doesn’t need to be off the ventilator to go home. Like I said, unfortunately, she will be somewhat ventilator dependent, probably for the rest of her life. I don’t know whether the hospital told you that. But the bottom line also is that most patients with high cervical spinal cord injuries like C1, C2, C3, go home with Intensive Care at Home and live full and meaningful lives at home while still requiring full-time or part-time ventilation support with tracheostomy.

We’ve worked with countless families in exactly your situation. Some clients remain on ventilators for months, for years, or for the rest of their lives at home with the tracheostomy, many continue to make progress regardless with their weaning attempts in the home environment. The home environment often provides better opportunities for rehabilitation because patients are happier and more motivated. Therapy can be integrated into daily life, sleep quality often improves, risk of infection decreases, psychological well-being improves dramatically. Also, as a bonus tip, ask if your daughter can have. A diaphragm pacer, a diaphragm pacer might simply be able to allow her to be off the ventilator for periods during the day or the night, and she can breathe with the help of a diaphragm pacer. Ask that question.

Now, my specific recommendations for you, Debbie is the next step:

Number one, talk to the ICU team about a formal weaning process, request a meeting with the intensive care specialists and rehabilitation team to establish a clear weaning plan with specific goals and timelines. Start planning for home transition now with Intensive Care at Home. Don’t wait until she’s off the ventilator after 5 months. If she’s medically stable, you should be actively planning the transition home. This typically takes 4 to 8 weeks to organize properly.

Review our evidence-based Mechanical Home Ventilation Guidelines. I put a link towards it in the written version of this blog and read through the complete guidelines.

This will give you a comprehensive understanding of what’s involved and what questions to ask.

Get expert help, of course, this is exactly the type of situation we’re having expert guidance makes all the difference with at Intensive Care at Home. We help families navigate exactly this transition, the interface of ICU and going home with complex needs like spinal injury, ventilator and tracheostomy dependency and, and what about the long-term prognosis?

Like I said, with a C2 to C3 spinal cord injury, there’s a possibility that your daughter may need long-term ventilation and tracheostomy support, particularly at night, even if she can be off the ventilator for parts at least during the day but she can definitely improve and like I said, ask for a diaphragm pacer, whether that is an option.

And lastly, Debbie, going home doesn’t mean giving up on weaning, it means continuing the journey in a better environment with better quality of life, and this is once again, Exactly what we do at Intensive Care at Home, we help families like yours transition, loved ones from ICU to home even with complex needs like spinal injury and ventilator dependence.

We can help you with understanding your options, planning the transition, coordinating with the medical and hospital team, organizing equipment and supplies, arranging appropriate care at home, ongoing support and troubleshooting.

If you’d like to discuss your daughter’s specific situation in more details, I’d encourage you to call us at intensivecarehome.com on one of the numbers on the top of our website or send me an email to [email protected].

So, 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 a long-term stay in intensive care for ventilation, tracheostomy, home BIPAP (Bilevel Positive Airway Pressure), home CPAP (Continuous Positive Airway Pressure), ventilation without tracheostomy and tracheostomy care without ventilation, home TPN, home IV potassium, home IV magnesium, home IV antibiotic, and home IV fluids. We’re providing cough assist management at home, ventilation weaning management at home, central line, PICC line, Hickman’s line, as well as port management at home. We’re also providing nasogastric tube, nasojejunostomy tube, PEG, PEJ tube management at home, as well as IDC (indwelling urinary catheter) and SPC (suprapubic catheter) management at home as well as 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 Area Health District, their in-touch program, saving approximately $2000 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.

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 Veteran 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’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 go from our first case study to advocate successfully for funding 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, who are 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.

Plenty of examples where clients with support worker models or even RN models without ICU experience have died at home and 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, and 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, and 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. They are, 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 bed 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.

This is also why we are providing NDIS Support Coordination. We have a team of experienced NDIS support coordinators, and they have a wealth of knowledge. We’re also providing TAC (Transport Accident Commission) 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.

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, in Albury, Wodonga, in Bendigo, in Geelong, in Warragul, and also in Wyelangta in Victoria.

If you have worked in critical care nursing for a minimum of 2 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 a tailor-made solutions for our clients which includes regular staff. Our clients also do 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.

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 have to take the pressure off your ICU and ED beds, and 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. 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 (Emergency Department) beds.

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 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.