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 the best care and treatment, even if you’re not a doctor or a nurse in intensive care.

So, today’s question comes from Paul, who’s one of our clients, who says,

“Hi Patrik, 

They are weaning my mom off the ventilator. My mom has been on CPAP mode for one week, and then they changed it to standby. The longest she’s been on standby is 12 hours, sometimes two hours, one hour, four hours, sometimes 10 minutes, then she goes back to CPAP (Continuous Positive Airway Pressure) again. I notice when she’s on standby, when exhaling, her belly looks forced. Is she going to be able to be weaned off the ventilator and avoid the tracheostomy?”

That’s a great question, Paul, and it’s one we get all the time from families in intensive care here at intensivecarehotline.com.

Now, let’s break this down step by step because what you’re describing is a typical ICU weaning pattern, but there are some red flags in what you’re saying that need attention.

So, what’s happening during CPAP versus standby? When your mom is on CPAP, which stands for continuous positive airway pressure, the ventilator still provides some level of support, especially at the end of exhalation, to help keep the lungs open and make breathing easier. PEEP (Positive End Expiratory Pressure) is being delivered to keep the airway and alveoli open.

When they switch it to standby, the ventilator is essentially not providing any support. It’s only monitoring. That means your mom is fully breathing on her own, and if she’s not ready for that, she’ll start to show signs of distress, like the forced belly movement you’ve noticed. It basically means she’s using her accessory breathing muscles, and that’s never a good sign.

That forced exhalation is her body working harder to breathe out, often due to weak respiratory muscles, fatigue, or poor lung compliance after being ventilated for a long time, after being in an induced coma for too long, on sedation, on opiates, not receiving any physical therapy, or not receiving any breathing exercises.

Like I’ve been saying for a long time, when your loved one is ventilated in ICU on a breathing tube, the first question that you need to ask is: Is the intensive care team doing everything beyond the shadow of a doubt to wean your loved one off the ventilator and the breathing tube to avoid the tracheostomy?

I’ve made a video about this titled “How to Wean a Critically Ill Patient Off the Ventilator and the Breathing Tube” that is linked in the written version of this blog, and I encourage you to watch that video.  So Paul, what you haven’t shared is how long has your mom been ventilated for? How long has she been in an induced coma? When have they stopped sedation? When have they stopped opiates? What sedation was she on? What opiates was she on? How much was she on? Are the liver and kidneys working so that sedation and opiates can be washed out? That’s all part of moving towards a successful extubation.

The biggest challenge for families in intensive care is 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. That’s exactly what you’re up against here, Paul.

Also, have you asked for access to all medical records?.  It’s very important that each and every one of you watching this, each and every one of you having a loved one critically ill in intensive care, one of the first things that you need to do is getting access to the medical records so you can get a second opinion, hold the intensive care team accountable to their actions. We can help you with getting that second opinion. We can help you with looking at medical records. I can help you with talking to doctors and nurses directly, asking all the right questions, so that you’re not blindly following.

So Paul, what does all of this mean for weaning success? If your mom can’t stay on standby for more than a few hours, it means she’s not ready to be completely weaned off the ventilator yet. This doesn’t mean she won’t get there. It just means the team needs to take a slower, more structured approach to weaning. What does her chest X-ray show? What are her arterial blood gases? Sometimes weaning failure happens because the underlying cause like could be a pneumonia, could be heart failure, could be a trauma, could be muscle weakness, hasn’t been resolved yet.

The patient in this situation your mom, might be too fatigued or undernourished and malnourished to sustain independent breathing. Also, there might be no structured physiotherapy or chest care plan to help strengthen breathing muscles. For example, you’re telling me that they’re putting her on spontaneous mode and they switch off the CPAP mode, but there’s no mention that physiotherapy is doing some work with her. That might be one of the missing links.  The nurse should be doing some work with her, doing some breathing exercises, mobilizing her, seating her out of bed, doing physical therapy. All of that is absolutely necessary to go from point A to point B.

The consequences of your mom not weaning off the ventilator and the breathing tube is that she might need a tracheostomy. You don’t want that.  She might also not be able to tolerate the spontaneous breathing mode of CPAP because she’s got the breathing tube in her mouth. It’s very uncomfortable. You haven’t mentioned that. The ICU team hasn’t mentioned that. But after having worked in critical care nursing for over 25 years in three different countries, I do know how uncomfortable the breathing tube is. I’ve looked after thousands of critically ill patients and their families, so I know what that looks like.

Another option here might be: Is she ready for extubation onto BiPAP (Bilevel Positive Airway Pressure) or CPAP? Or to high flow nasal prongs, high flow nasal cannula?

So what should you be asking the ICU team? Ask the ICU team the following:

Number one, get access to all medical records.

Number two, what are your mom’s ABG (arterial blood gas) results while she’s on standby versus CPAP? Because if her blood gases on standby are not good, she’s not ready.

Next, what’s her respiratory rate, which is the breathing rate per minute, tidal volume and work of breathing? You’ve already hinted at the work of breathing. Your mom’s stomach muscles or diaphragm muscles look erratic, so you already know that’s not working.  Has she had another spontaneous breathing trial recently and what were the results?

Next, is she getting daily chest physiotherapy and mobilization? And what’s the plan if she can’t be weaned off the ventilator soon?

So, my recommendations here are:

If your mom has been on the ventilator for more than 10 to 14 days and is struggling to wean, the ICU should be considering a tracheostomy. A tracheostomy will make breathing more comfortable, reduce and in most cases eliminate sedation and make it easier to continue weaning safely, either in ICU or at home with 24/7 Intensive Care at Home nursing, which we provide at intensivecareathome.com.

If the ICU team is pressuring you to make a decision about life support, tracheostomy, or potentially even withdrawal of treatment, you need to get advice from us before signing or agreeing to anything. These are life or death decisions that you can’t just take lightly. You’re in a once-in-a-lifetime situation that you simply cannot afford to get wrong.

So next steps are to go to intensivecarehotline.com, call me on one of the numbers on the top of our website or send me an email to [email protected] with your questions. I offer one-on-one consulting and advocacy where I talk to doctors and nurses on your behalf, get results, and help you understand the medical language and give you real control, power, and influence over your loved one’s care.

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 intensivecarehotline.com, and I will talk to you in a few days.

Take care for now.