If your loved one has been placed on ECMO in the ICU, you are most likely frightened, overwhelmed, and desperate for real answers. Donna reached out to me recently with a question I hear often from families navigating this terrifying situation:

Hi Patrik, My sister has been placed on ECMO for pneumonia. She’s currently been receiving treatment for ECMO for 5 days. They tried to wean her sedation yesterday, but her saturations and respiratory rate dropped. Is this normal? Will she be strong enough to come off the ECMO? — Donna

Donna, thank you for reaching out. This is one of the most important questions a family member can ask, and I want to give you a thorough, honest answer — because what happens in the next days and weeks will determine everything.

What Is ECMO and Why Is It Used for Pneumonia?

ECMO stands for Extracorporeal Membrane Oxygenation. In plain English, it is a machine that temporarily takes over the job of your sister’s lungs — and sometimes her heart — when those organs are too sick to do the work themselves.

In the case of severe pneumonia, the lungs become so inflamed and damaged that even a mechanical ventilator cannot push enough oxygen into the blood or remove enough carbon dioxide. ECMO bypasses the lungs entirely by circulating blood outside the body through an artificial membrane lung, oxygenating it, and returning it to the body.

ECMO is a last resort. It is not used lightly. The fact that your sister is on ECMO means the ICU team determined that her lungs had failed to a degree where conventional ventilation alone could not sustain her life. That is a serious situation — but people do survive ECMO and recover.

Key Fact: ECMO for severe pneumonia (veno-venous ECMO, or VV-ECMO) is used to support oxygenation while giving the lungs a chance to rest and heal. It is a bridge to recovery — or in some cases, a bridge to a transplant decision.

Is It Normal for Saturations and Respiratory Rate to Drop When Sedation Is Reduced?

Yes — and this is one of the most important things I want Donna and every family reading this to understand.

When the ICU team reduces sedation, they are testing how much of the breathing work your sister can take on herself. If her saturations drop and her respiratory rate increases when sedation is lightened, it typically means one or more of the following:

• Her lungs are not yet recovered enough to maintain adequate oxygenation without full ECMO support.
• She is still in the acute phase of her pneumonia, and the lung inflammation has not been resolved sufficiently.
• She may be experiencing respiratory distress, anxiety, or agitation as she becomes more awake — which increases her oxygen demand.
• Her respiratory muscles may be weak after days of sedation and mechanical ventilation (a phenomenon called ICU-acquired weakness).

This does not necessarily mean she will not recover. It means she is not ready to come off ECMO yet — and that is important information for the team to have. A failed weaning attempt is not a failure. It is data.

Important: The fact that the team is attempting sedation weaning on Day 5 is actually a positive sign. It means they are thinking about the pathway off ECMO. The question is whether her lungs are responding — and that requires close monitoring over days, not hours.

What Are the Treatment Options for Donna’s Sister?

This is where I want to be very direct with you, Donna — and with every family reading this. There is not one single treatment path. There are several, and understanding them gives you the ability to ask the right questions and advocate effectively for your sister.

Option 1: Successful Weaning Off ECMO — Recovery

If your sister’s lungs begin to heal, the ECMO team will gradually reduce the flow and support settings on the machine — a process called a weaning trial. If her lungs take over and her oxygen levels remain stable, she can be decannulated (the ECMO cannulas are removed). She would then continue on a mechanical ventilator and, eventually, work toward extubation (breathing tube removal).

This is the best outcome. It happens in a significant proportion of VV-ECMO patients with pneumonia, particularly those who are younger, without significant underlying lung disease, and whose infection is brought under control.

Option 2: Prolonged ECMO Run — Watchful Waiting

Some patients require a longer ECMO run — weeks rather than days. If the infection is severe, if there are complications (secondary infections, other organ involvement), or if the lungs are slow to recover, the team may keep the patient on ECMO for an extended period while treating the underlying cause.

This is associated with higher complication risks — bleeding, clotting, infection, neurological events — but it is sometimes the right strategy if recovery is still considered possible.

Option 3: Tracheostomy and Long-Term Ventilation

If your sister cannot be weaned off the ventilator following ECMO— or if she has significant lung damage and requires ongoing ventilatory support — the ICU team may recommend a tracheostomy. This is a surgical opening in the neck that allows a breathing tube to be placed directly into the windpipe, bypassing the mouth and throat.

A tracheostomy makes long-term ventilation more manageable, more comfortable, and potentially compatible with life outside the ICU. This is where home-based intensive care with INTENSIVE CARE AT HOME becomes a real option — and I will come to that shortly.

Option 4: ECMO as a Bridge to Lung Transplant

This is an option that many families are never told about — and it is one of the most important conversations that can happen in an ECMO case where the lungs are not recovering.

If the ICU team and specialist respiratory physicians determine that your loved one’s lungs are so severely and irreversibly damaged that they are unlikely to recover — either from the pneumonia itself or from the scarring (fibrosis) that can follow — a lung transplant may be considered. In this scenario, ECMO is used as a bridge: it keeps the patient alive and as stable as possible while a transplant assessment is completed and — if they are listed — while a donor organ becomes available.

Bridge-to-transplant ECMO is a highly specialized pathway. It is not available at every hospital, and it is not appropriate for every patient. The transplant team — separate from the ICU team — will assess the patient’s overall condition, age, other organ function, the likelihood of surviving the transplant procedure itself, and their ability to manage post-transplant care, including lifelong immunosuppression. Not everyone will be eligible. But for those who are, it can be lifesaving.

In Australia, USA, Canada and the UK lung transplants are performed at a small number of specialist centers. If your loved one is at a hospital that does not have a transplant program, and ECMO bridge-to-transplant is potentially relevant, a transfer to one of these centers — or at minimum a specialist consultation — may need to be urgently requested.

Here is what I want every family to understand: the ICU team managing your loved one on a day-to-day basis may not proactively raise transplant as a pathway — either because they do not think it applies, because they are waiting for a clearer clinical picture, or because the conversation feels too premature or complex. But if your loved one has been on ECMO for more than 7 to 10 days with limited or no lung recovery, and there is no clear reversible cause, you have every right to ask – has a lung transplant assessment been considered, and if not, why not?

This is a question that requires clinical records, specialist input, and an understanding of your loved one’s full medical picture — which is exactly why access to all medical records, and an independent consulting call with the ICU team, is so critical. My team at Intensive Care Hotline has helped families raise exactly this question — and in some cases, it has changed the entire trajectory of care.

Option 5: Palliative Care or Withdrawal of Treatment

If the medical team determines that recovery is not achievable — or if the risks of continuing ECMO outweigh the potential benefits — a conversation about goals of care, palliative care, or withdrawal of life-sustaining treatment may occur.

This is one of the most devastating conversations a family can face. If you are in this situation, you need to be fully informed, you need to understand what is being proposed and why, and you need to know your rights as a family member or decisionmaker. I strongly encourage you to seek independent advocacy.

Will She Be Strong Enough to Come Off ECMO?

This is the question every family asks — and the honest answer is: it depends on several factors that only a close clinical assessment can determine. These include:

• The severity and causes of her pneumonia — bacterial, viral (including COVID-19 or influenza), fungal, or aspiration-related
• Whether the infection is being adequately treated and is responding to antibiotics or antivirals
• The degree of lung damage — is it reversible inflammation, or has fibrosis (scarring) set in?
• Her age, baseline health, and pre-existing lung function
• The status of her other organs — kidneys, heart, liver, brain
• How long has she been on ECMO and whether complications have arisen
• The specific ECMO weaning trial results — oxygen levels, lung compliance, respiratory effort when support is reduced

I cannot tell you with certainty whether your sister will come off ECMO. But what I can tell you is that you should be getting clear, specific, honest answers from the ICU team about each of these factors — and if you do not, that is a problem.

This is exactly why having access to all of your sister’s medical records is critical. You and your family have every right to request and review her full medical records — her ECMO flow parameters, oxygen readings, sedation levels, lung compliance data, infection markers, and imaging. Without this information, you cannot ask the right questions, hold the team accountable, or make informed decisions as her family.

How Intensive Care Hotline Can Help You

At Intensive Care Hotline, we work with families in exactly this situation — families like Donna’s who are trying to navigate one of the most complex and frightening medical situations imaginable, often from a distance, often without a medical background, and often feeling dismissed or overwhelmed by the ICU team.

Here is how we can help:

• We review your loved one’s medical records, so you understand what is actually happening, not just what you are being told is happening.
• We join your family in a consulting call with the ICU team, so your questions are asked clearly, professionally, and with clinical authority — and so the team knows that your family has independent expert support.
• We help you understand the treatment options — ECMO weaning, tracheostomy, long-term ventilation, palliative care — so you can participate meaningfully in the decision-making process.
• We advocate for your loved one’s best interests and help ensure they are receiving appropriate, evidence-based care.

What About Life After ECMO and the ICU? The Home Ventilation Option

If your sister’s recovery requires long-term ventilation — whether invasive (via tracheostomy) or non-invasive (via a mask), and whether for recovery, ongoing support, or palliative care — I want you to know that there is a life outside of the ICU.

My team at Intensive Care at Home is Australia’s only third-party accredited intensive care at home nursing service. We care for ventilator-dependent adults and children across all states and territories in Australia. We’re employing hundreds of years of Critical Care Registered Nursing experience combined in the community.

We have helped patients who spent months in the ICU — patients who were told they might never leave — transition safely to home care with 24/7 nursing support. This is not just a quality-of-life issue. It is often safer, more dignified, and more cost-effective than long-term ICU admission.

• Invasive ventilation via tracheostomy at home
• Non-invasive ventilation (CPAP/BiPAP) at home
• Weaning programs delivered in the home environment
• Palliative ventilation and end-of-life care at home
• NDIS-funded and privately funded care packages

If your sister cannot be weaned off the ventilator, home is still possible. Visit www.intensivecareathome.com to learn more about our service or call us on 1300 921 536 in Australia to speak with our team. If you’re in the USA, UK, Canada, India or any other country we would like to hear from you as well!

What Should Donna Do Right Now?

If I were advising Donna directly, here is what I would tell her:

1. Request all medical records immediately. Ask the ICU for daily nursing and medical notes, ECMO flow and pressure readings, blood gas results, chest X-rays, CT scans, and the team’s documented clinical reasoning. This is your right.
2. Ask for a family meeting with the full ICU team — including the ECMO specialist, the intensivist, the respiratory team, and ideally the physiotherapist. Ask specifically: what are the criteria for weaning her off ECMO? What does the team expect over the next 7–14 days? What is the plan if weaning fails?
3. Get independent clinical support. You do not have to navigate this alone. Reach out to our team at Intensive Care Hotline so we can help you understand what is happening, ask the right questions, and advocate for your sister.
4. Know your options for the long term. Whether your sister recovers fully, requires ongoing ventilation, or needs palliative care — there are options beyond the ICU, and you should understand them now.

Final Thoughts

Donna, your sister has one of the most powerful advocates possible — a family member who is asking questions, seeking answers, and refusing to accept confusion as a substitute for clarity. That matters enormously.

ECMO is a serious, complex intervention. The fact that a sedation wean attempt caused her saturations to drop is concerning, but it is not the end of the story. What matters now is close monitoring, expert clinical management, family advocacy, and access to all the information you need to make the best decisions for your sister.

If you want to talk through your sister’s situation with me or our team, please reach out. We are here.

Consulting: www.intensivecarehotline.com

Home ventilation: www.intensivecareathome.com

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.

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 best care and treatment always. 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.

That’s why I do one on one consulting and advocacy over the phone, Zoom, WhatsApp, whichever medium works best for you. 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. 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 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 eBooks and 21 videos that I have personally written and recorded. 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 best care and treatment always.

All of that you get at intensivecarehotline.com. Call us on one of the numbers on the top of our website or simply send us an email to [email protected] with your questions.

If you like my videos, subscribe to my YouTube channel for regular updates for families in intensive care. Click the like button, click the notification bell, share the video with your friends and families, and comment below what you want to see next, what questions and insights you have from this video.

I also do a weekly YouTube live where I answer your questions live on the show. You will get notification for the YouTube live if you are a subscriber to my YouTube channel or my intensivecarehotline.com email newsletter at intensivecarehotline.com.

Your FREE Download:  ICU FAQ Sister on ECMO for Pneumonia

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.