My name is Patrik Hutzel from intensivecarehotline.com, where we instantly improve the lives for families of critically ill patients in intensive care, so that you can make informed decisions, have peace of mind, control, power and influence, making sure your loved one always gets best care and treatment, even if you’re not a doctor or a nurse in intensive care.

Today, I have a question from Saul, who says:

“Hi Patrik,

My mom is having a tracheostomy and she has been on CPAP (Continuous Positive Airway Pressure) mode for a week, and then they changed it to standby. The longest she has been on standby is 12 hours, sometimes 2 hours, 1 hour, 4 hours, 10 minutes, and anything in between, and then she goes back to CPAP (Continuous Positive Airway Pressure) again. I notice when she’s on standby, her exhaling and her belly look forced. Is she going to be able to be weaned off the ventilator? Please advise.

From Saul.”

Thank you so much for reaching out, Saul, and I can absolutely understand how stressful and confusing this must be for you right now, watching your mom go through this. I want to give you the most helpful and best answer I can.

Let me address your question directly. Can your mom be weaned off the ventilator and the tracheostomy? The short answer is yes, based on what you’re describing anyway. There are actually some positive signs here and I don’t want you to lose hope, but I also want to give you the full picture so you can have real information, real power and real control in this situation.

Let’s start with clarifying some terminology.

What is CPAP mode and what does standby mode mean? So that you actually understand what the intensive care unit team is really doing with your mom.

Continuous positive airway pressure (CPAP) mode means your mom’s ventilator is providing a constant level of pressure to keep her airways open, but she’s doing her own breathing. The ventilator is essentially supporting her, but she is initiating her own breaths. This is a very important and positive step in the weaning process.

Standby mode, which in many ICUs is also referred to as a spontaneous breathing trial (SBT), or sometimes a T-piece trial or trach collar, trach mask, means the ventilator is essentially disconnected.

Your mom is breathing on her own with very minimal or no support, just maybe with some humidified oxygen, sometimes even just with some humidified air.

This is actually the gold standard test for whether a patient is ready to be weaned off the ventilator and ultimately decannulated from the tracheostomy.

The fact that your mom has managed 12 hours on a spontaneous breathing trial (SBT) or standby is actually a very encouraging signs now, and it’s not something a patient who has no chance of being weaned off the ventilator can do. Twelve hours of spontaneous breathing is significant, so please take some comfort in that.

Now the next question is, why is she going back to continuous positive airway pressure (CPAP) after a spontaneous breathing trial?

The reason she’s cycling back to CPAP after periods on standby is most likely because she’s getting fatigued. Weaning off a ventilator, especially after a tracheostomy, is like doing a marathon for the respiratory muscles. Your mom’s breathing muscles have been supported by the ventilator, and now they need to be gradually strengthened and retrained, just like any other muscle after a long period of inactivity. This takes time and patience. It is a very normal part of the weaning process. Going back on CPAP to rest is not a failure. It is actually the right approach.

The ICU team gives your mom rest periods on supported breathing, and then trials on spontaneous breathing trials or standby again, progressively increasing the duration. The goal is to build up that stamina until she can sustain herself off the ventilator entirely.

Now Saul, you observed something really important here, and I want to acknowledge that. The fact that you noticed her belly moving with forced exhalation during standby or spontaneous breathing trials tells me that your mom is working hard to breathe when the ventilator steps back.

This is called accessory muscle use and active exhalation, and it can indicate that her breathing effort is increased, meaning she’s working harder than ideal to exhale. It’s also usually a sign that your mom, or a patient in general, is getting fatigued while breathing spontaneously. This is absolutely something the ICU team needs to monitor closely.

In a normal relaxed breath, exhalation is passive. The diaphragm and chest simply recoil. When the belly is actively pushing during exhalation, it often means the patient is under increased respiratory load or that there may be some underlying factor, such as secretions, airway resistance through the tracheostomy, lung compliance issues, or respiratory muscle weakness that is making breathing harder than it should be.

This is exactly the kind of clinical observation you need to raise with the ICU team.

Ask them directly:

What is causing the forced abdominal exhalation during spontaneous breathing trials?

Is this a sign that she’s not ready for longer standby periods, and what is the plan to address it?

So what does your mom need to be successfully weaned?

For your mom to be successfully weaned off the ventilator and eventually have her tracheostomy removed, which is also called decannulation, the intensive care unit team will typically be looking at a number of key factors.

These include her respiratory muscle strength, her ability to protect her airway, her secretion management and cough strength, her oxygen requirements, her neurological status, her nutritional status, and her overall medical stability.

All of these factors matter, and you need access to all of the medical records and clinical data to truly understand where your mom stands on each of these parameters.

I cannot stress this enough, Saul. You have the right to access all of your mom’s medical records, including doctors’ notes, nurses’ notes, ventilation settings, blood gas results, lab results, chest X-rays, all clinical notes from the ICU team, full list of medication, fluid balance charts, everything. Leave no stone unturned.

This information is critical because without it you are essentially navigating in the dark. Also, something that I haven’t mentioned yet, but is critically important, your mom needs to get mobilized. She needs to get out of bed. Imagine you’re lying in bed and you’ve been in a coma for many days or weeks. Your muscles are weak, you’re deconditioning, and you need to be weaned off the ventilator. Your breathing muscles need to strengthen, just as I explained before, but the quickest way for breathing muscles to strengthen is to sit up in a chair and do breathing exercises. It ain’t going to happen while lying in bed. Even start with 5, 10 minutes a day, build it up to 20 minutes to half an hour to an hour, until your mom can sit in a chair all day, and you will find that then ventilation weaning will also happen much quicker once you get stronger.

This must be combined with physical therapy or physiotherapy, movement, breathing exercises, coughing exercises. Do not underestimate the importance of it. I also highly recommend that the ICU there gives your mom a shower regularly. It will work wonders. Humanize your mom. Imagine she might not have had a shower for weeks.

A good ICU will do the rehabilitation part, will mobilize your mom, will give your mom a shower, and you will see that things will happen for her. To put all of this in place, this is exactly where a consulting call with myself or one of my team members at intensivecarehotline.com, with you and with the ICU team, will make all the difference.

We review your mom’s clinical situation in detail, we speak directly with the ICU team on your behalf and with you on the phone.

We ask the right clinical questions, we advocate for your mom, and we make sure that the weaning plan the ICU team has in place is the right one, and that they’re optimizing every single variable to give your mom the best possible chance of being weaned successfully.

We have done this for hundreds, if not thousands, of families in intensive care around the world. We know what questions to ask, what to look for, and how to speak to the intensive care team so that your mom gets best care and treatment, and sometimes just having an experienced critical care nurse consultant on the phone with the ICU team on your behalf changes everything, because suddenly the team knows that you are informed, engaged, and you have clinical support behind you.

Let’s also look at the sort of worst-case scenario. What if your mom can’t be weaned off the ventilator?

Again, I want to be transparent with you about this, Saul, because I believe in giving families real information and real value, not just what they want to hear. In some cases, patients with a tracheostomy are not able to be fully weaned off the ventilator, or they might not be able to be fully weaned off the tracheostomy but weaned off the ventilator. This doesn’t necessarily mean there’s no quality of life or no future. Far from it.

If your mom ultimately needs long-term ventilation, whether that is invasive ventilation like now with a tracheostomy, or non-invasive ventilation such as BiPAP (Bilevel Positive Airway Pressure) or CPAP (Continuous Positive Airway Pressure), if she can be weaned off the tracheostomy, or if she does need the tracheostomy without ventilation, there’s a very real option that will completely change the trajectory for your mom and for your family. This option is intensivecareathome.com.

At intensivecareathome.com, we provide long-term ventilated adults and children with tracheostomies the ability to live at home with full 24-hour intensive care level nursing, 24 hours a day. This is not just theoretical. We have done this successfully for many patients across Australia and internationally since 2012.

Patients who go home in this way, even those who are still ventilator-dependent, often blossom in a home care environment compared to spending months or years in an ICU or rehabilitation or long-term acute care facilities.

Intensive Care at Home is a real life-changing option for your mom whether she needs long-term invasive ventilation with a tracheostomy, long-term non-invasive ventilation such as BiPAP or CPAP with a mask, or whether she needs a tracheostomy without ventilation or even palliative care in the comfort of your own home. Going home with a ventilator, with a tracheostomy, changes everything for patients and their families. It also changes everything for ICUs and for hospitals.

The quality of life, the emotional well-being, the sense of normality, it is incomparable to what an ICU environment can offer long-term. So please visit intensivecareathome.com and explore whether this could be the right path for your mom, whatever outcome of the weaning process.

Now right now, Saul, the most important things you can do for your mom are:

First, get access to all of her medical records and understand the current weaning plan.

Number two, ask the ICU team specific questions about what the goal is for standby duration and spontaneous breathing trial duration, what they’re doing to optimize her weaning, what they’re doing to mobilize her and increase the time spent outside of bed in a chair, what they are doing in terms of physiotherapy and physical therapy.

Number three, raise the observation about the forced belly breathing during standby or spontaneous breathing trial. This is a clinically important sign that needs to be addressed ASAP.

Number four, contact us at intensivecarehotline.com for a consulting call so I can support you, advocate for your mom, and make sure the ICU team is doing everything possible to give your mom the best chance of being weaned off the ventilator successfully.

Reach out to us at intensivecarehotline.com at our website, call us on one of the numbers on the top of our website, or send us an email to support@intensivecarehotline.com.

Saul, I want to leave you with this: your mom has shown real signs of progress. Twelve hours on standby is definitely meaningful. Do not give up. Stay informed, stay engaged, stay empowered, and get the right support around you.

I have worked in critical care nursing for 25 years in three different countries where I worked as a nurse manager for over five years in intensive care. And I’ve been consulting and advocating for families in intensive care since 2013 here at intensivecarehotline.com. And I can very confidently say that we have saved many lives with our consulting and advocacy, because of our insights, and you can verify that on our testimonial section at intensivecarehotline.com and you can verify it on our intensivecarehotline.com podcast section, where we have done client interviews.

And because our advice is absolutely life-changing, right? The biggest challenge for families in intensive care is simply that they don’t know what they don’t know. They don’t know what to look for, they don’t know what questions to ask, they don’t know their rights, and they don’t know how to manage doctors and nurses in intensive care. And that’s why we help you to improve your life instantly, making sure you make informed decisions, have peace of mind, control, power, and influence, making sure your loved one gets the best care and treatment always. And that’s why you can join a growing number of members and clients that we have helped over the years, saving their loved ones’ lives.

And that’s why I do one on one consulting and advocacy over the phone, Zoom, WhatsApp, whichever medium works best for you. And I talk to you and your families directly. I handhold you through this once-in-a-lifetime situation that you simply cannot afford to get wrong. And when I talk to families directly, I also talk to doctors and nurses directly, asking all the questions that you haven’t even considered asking but must be asked when you have a loved one critically ill in intensive care.  I also represent you in family meetings with intensive care teams.

We also do medical record reviews in real time so that you can get a second opinion in real time. We also do medical record reviews after intensive care, so, if, in case you have unanswered questions, if you need closure or if you are suspecting medical negligence.

We also have a membership for families of critically ill patients in intensive care, and you can become a member if you go to intensivecarehotline.com. If you click on the membership link or if you go to intensivecaresupport.org directly. In the membership, you have access to me and my team 24 hours a day in the membership area and via email, and we answer all questions intensive care-related. In the membership, you also have exclusive access to 21 e-books and 21 videos that I’ve personally written and recorded. And all of that will help you to improve your life instantly, make informed decisions, have peace of mind, control, power, and influence, making sure your loved one gets the best care and treatment always.

And all of that you get at intensivecarehotline.com. Call us on one of the numbers at the top of our website or simply send us an email to support at intensivecarehotline.com with your questions.

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Thank you so much for watching.

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

Take care.