My mom is on the ventilator in ICU on standby mode. Will she be able to wean off the ventilator after a pneumonia?

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.

Today I have a question from Saul, one of our clients who says,

“Hi Patrik,

 My mom has been on CPAP (Continuous Positive Airway Pressure) mode for a week and then they changed it to a standby. The longest she’s been on standby is 12 hours, sometimes two hours, one hour, four hours, 10 minutes. Then she goes back to CPAP again. I notice that when she’s on standby, her exhaling, her belly looks forced. She can’t breathe even at 100% at treating her for pneumonia. Is she going to be able to be weaned off the ventilator? Please advise.

From Saul.

Saul, thank you so much for your question.

What you’re describing here with your mom going back and forth between CPAP mode and standby mode on the ventilator is actually quite common when someone’s recovering from a pneumonia in ICU. But I can hear your concern in your message and rightfully so, and also what’s important to note here, when you’re talking about standby mode, it basically means your mom is breathing spontaneously, that its basically means, without any help.

Let’s talk about understanding ventilator weaning and standby mode in more detail. Let me explain what’s happening here. When your moms on standby mode, the ventilator is basically watching and waiting. It’s there if she needs it, but she’s doing most or all of the breathing work for herself. The fact that she’s been on standby for up to 12 hours at a time is actually a positive sign. It shows she has some capacity to breathe independently. However, what you’re noticing with the forced belly breathing and the inconsistent tolerance, sometimes 12 hours, sometimes just 10 minutes, tells me that she’s struggling with the work of breathing.

This could be for several reasons. Active pneumonia creating inflammation and fluid in the lungs. Respiratory muscle weakness from being on the ventilator for too long and being in a coma with sedation, and opiates. Ongoing infection that hasn’t fully resolved despite treatment, underlying lung conditions that were there before, fluid overload making it harder to breathe.

The next question is, can she be weaned off the ventilator? And Saul, here’s the thing, I can’t give you a definitive answer without having access to all of her medical records. This is absolutely critical because we need to see chest X-rays, CT scans, blood gas results, the trend of ventilator settings in recent days, infection markers and white blood cell count and all of her pathology and lab results, lung mechanics and compliance measurements, her oxygen requirements, complete medical history, doctor’s notes, nurses’ notes, physiotherapy notes, and the list goes on.

What I can tell you is that pneumonia is one of the most common reasons people do need ventilators and many people do successfully wean off once the infection is treated and their lungs recover. But the timeline varies enormously from patient to patient.

What needs to happen for successful weaning? Your mom needs several things to align.

1. The pneumonia needs to be adequately treated, which takes time, sometimes seven to 14 days or longer, and therefore she needs the appropriate antibiotics, antifungals, whatever infection she has needs to be treated with the appropriate medication.
2. Her respiratory muscles need to rebuild strength. This is why they’re doing these trials, but they need to support these trials by physical therapy, breathing exercises, coughing exercises, sitting on the edge of the bed, getting out of bed ideally. It’s all possible and needs to be done.
3. Any fluid overload needs to be managed with diuretics, if necessary, but also mobilization can also help.
4. Nutrition needs to be optimized, you can’t rebuild muscles without proper nutrition, and
5. She needs to be alert and cooperative enough to participate in breathing and the weaning process.

The back and forth you’re seeing is the ICU team testing her limits and building her stamina. It’s frustrating to watch, but it’s part of the process.

Here, Saul is why you need expert guidance right now. This is exactly where families get stuck. You’re watching, you’re noticing things like the forced belly breathing, but you don’t have the full picture to know if this is normal recovery or if something needs to change in her treatment plan. This is where a consulting call with myself or one of my team members at intensivecarehotline.com becomes invaluable.

Here’s what we can do for you. Review all of your mom’s medical records and understand the complete clinical picture. Join a consulting call with the ICU team to ask the right questions about weaning protocols and timelines. Question and advocate for alternative approaches if the current plan isn’t working, clarify what the ICU team is thinking and translate their plan into language you understand. Push for answers about realistic timelines and what success looks like, without access to all the medical records and without being able to question the ICU team directly, you’re flying blind. And that’s not fair or appropriate to you and your mom.

What if your mom can’t be weaned off the ventilator? Now, Saul, it also needs to be addressed that the possibility may arise that your mom might have difficulty weaning off the ventilator or that she might need long-term ventilation. If the pneumonia has caused significant damage, or if she had underlying lung disease, or she’s simply too weak, she might need a tracheostomy for longer term ventilator support, or she might be able to wean off the ventilator, but she might need a tracheostomy for airway clearance. Both are a possibility.

And this is where Intensive Care at Home, becomes a critical option, and you can find more information at intensivecareathome.com. If your mom needs long-term ventilation, a tracheostomy, or even palliative care, you don’t have to keep your mom in ICU indefinitely. Intensive Care at Home allows you to keep your mom out of ICU predictably and permanently, provide ventilator, plus minus tracheostomy care in the comfort of your own home, avoid hospital acquired infections, give her a much better quality of life, and save 50% of the cost of an ICU bed.

Most families in intensive care don’t realize this option exists until it’s almost too late. If weaning becomes prolonged or unsuccessful, the conversation about intensivecareathome.com is a conversation you need to have early, not as a last resort.

Here’s what I recommend, Saul.

1. Gather all of your mom’s medical records immediately, and I mean all of medical records, leave no stone unturned.
2. Request a family meeting with the ICU team to discuss the weaning plan and realistic timelines.

Contact intensivecarehotline.com and myself for a consulting call, so me and my team can review the records with you and prepare you with the right questions or ask them directly. I’m happy to talk to them directly and ask the right questions. Watch for red flags, is she getting weaker? Are her oxygen requirements increasing? Is the pneumonia actually improving?

The forced belly breathing you’re noticing could be normal compensatory breathing, or it could indicate respiratory distress. The ICU team needs to assess her work of breathing, her respiratory rate, her use of accessory muscles, and whether she’s tiring out.

Don’t wait until it’s too late. I’ve worked with thousands of families in your exact situation. The ones who get the best outcomes are the ones who get expert guidance early, who have access to all medical records, and who aren’t afraid to question and advocate for their loved ones.

Your mom is still in the fight. The fact that she’s tolerating standby mode for 12 hours at times shows potential and it is very encouraging, but you need clarity, you need a plan, and you need someone in your corner who understands ventilators and weaning protocols inside out.

Contact us today at intensivecarehotline.com so we can review your mom’s medical case properly, and as a bonus point, ask them, are they doing everything beyond the shadow of a doubt to wean your mom off the ventilator, and are they doing everything beyond the shadow of a doubt to avoid the tracheostomy, and I can help you answer those questions because I can question and we can keep them accountable, and as a bonus point, also have a look at intensivecareathome.com in case your mom needs long-term ventilation, whether it’s with BIPAP (Bilevel Positive Airway Pressure), CPAP (Continuous Positive Airway Pressure) or with a tracheostomy, or even if she needs a tracheostomy without ventilation, intensivecareathome.com will offer a solution.

I have worked in critical care nursing for 25 years in three different countries where I worked as a nurse manager for over 5 years in intensive care. I’ve been consulting and advocating for families in intensive care since 2013 here at intensivecarehotline.com. I can very confidently say that we have saved many lives with our consulting and advocacy because of our insights. You can verify that on our testimonial section at intensivecarehotline.com. You can verify it on our intensivecarehotline.com podcast section where we have done client interviews because our advice is absolutely life changing.

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.

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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.