My name is Patrik Hutzel from intensivecarehotline.com, and this is another quick tip for families in intensive care.

Here at intensivecarehotline.com, 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, even if you’re not a doctor or a nurse in intensive care, and we’re making sure your loved one always gets best care and treatment in intensive care.

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

‘’Hi, Patrik.

My sister has been placed on ECMO (Extracorporeal Membrane Oxygenation) 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?

From Donna.’’

Donna, thank you so much for reaching out, and I want to start by saying what you and your family are going through right now is incredibly stressful. Having a loved one on ECMO in the Intensive Care Unit (ICU) for pneumonia is one of the most frightening situations a family can face, and I completely understand why you’re looking for answers.

In this blog post, I’m going to answer your question directly and in detail. I will explain what’s happening with your sister, why the sedation weans didn’t go as planned, what the path and the ventilator look like, what a tracheostomy might mean for her, and how you can best advocate for your sister right now. I will also explain how having access to all of your sister’s medical records and consulting call with me and the Intensive Care Unit (ICU) team will make a critical difference for your family.

What is VV ECMO, and why is your sister on it for pneumonia?

ECMO stands for Extracorporeal Membrane Oxygenation. Also known as venovenous ECMO, or VV ECMO, is used when the lungs have failed so severely that the ventilator alone cannot keep the patient alive. In VV ECMO, blood is drained from a large vein, passed through an artificial lung outside the body that adds oxygen and removes carbon dioxide, and then returned it to the body. This takes over the work of the lungs entirely, or partially, allowing the lungs to rest, heal, and potentially recover.

For severe pneumonia, whether bacterial, viral, or fungal, the infection can cause such widespread damage to the lung tissue that even maximum ventilator support is not enough. ECMO is essentially a bridge to recovery. It keeps your sister alive while the Intensive Care Unit (ICU) team treats the underlying pneumonia and waits for the lungs to begin recovering.

After 5 days on VV ECMO, your sister is still in a very early and critical phase. 5 days is not a long time at all when it comes to ECMO for severe pneumonia. It is not unusual for patients to remain on ECMO for 2 to 4 weeks, or even longer, depending on how severe the lung injury is and how well the lungs respond to recovery and to treatment.

Is it normal that her saturations and respiratory rate dropped when they tried to wean her sedation?

Yes, Donna, unfortunately, this is very common, and it does not necessarily mean your sister is not going to recover. Let me explain to you why this happened. When a patient is on VV ECMO and heavily sedated, the work of breathing is being done by the ECMO circuit and the ventilator. The patient’s own lungs are resting and contributing very little. When the Intensive Care Unit (ICU) team tries to reduce sedation, your sister begins to wake up, and her brain starts sending signals to breathe. But if her lungs are not yet strong enough to support even minimal spontaneous breathing effort, several things can happen.

Number one, her oxygen saturations can drop because her damaged lungs cannot maintain adequate gas exchange without the full support of the ECMO circuit. Her respiratory rate can increase as her body tries to compensate for inadequate oxygenation or rising carbon dioxide levels, which is exhausting and counterproductive.  And she may become agitated, which increases her oxygen demand and makes the situation worse.

This response tells the Intensive Care Unit (ICU) team that her lungs are not yet ready to take on any significant work of breathing. It doesn’t mean she will never come off ECMO. It means the lungs need more time and more treatment before the weaning process can progress. This is exactly why ECMO was invented — to buy time for the lungs to recover. The team will most likely have increased her sedation and support again, to allow the lungs to continue resting.

How do you successfully wean a patient off VV ECMO for pneumonia?

The process of weaning off VV ECMO is gradual and carefully controlled. The Intensive Care Unit (ICU) team needs to see clear evidence that the lungs are recovering before they begin reducing ECMO support. Here is what the weaning process typically involves.

Number one, treating the underlying pneumonia. Before weaning can even begin in earnest, the underlying infection has to be under control. This means the right antibiotics, antifungals, or antivirus, depending on the cause of the pneumonia, need to be working. The Intensive Care Unit (ICU) team will be monitoring blood cultures, sputum cultures, inflammatory markers like C-Reactive Protein (CRP) and procalcitonin, and white cell counts to gauge whether the infection is being brought under control.

Number two, lung recovery — the Computed Tomography (CT) scan and chest X-ray picture. The Intensive Care Unit (ICU) team will be doing regular chest X-rays and potentially Computed Tomography (CT) scans to assess whether the lung consolidation — the areas of lung that have been damaged by the pneumonia — is beginning to improve. Improved radiological findings are an important early indicator that weaning might become possible.

Number three, lung compliance and ventilator parameters. As the lungs recover, their compliance — their ability to expand and take in air — improves. The ventilator will require less pressure to deliver breaths. This is tracked closely by the Intensive Care Unit (ICU) team and is a key marker of lung recovery.

Number four, reducing ECMO blood flow. In VV ECMO weaning, the flow rate through the ECMO circuit is gradually reduced. As the circuit does less work, the patient’s own lungs are required to do more. The team watches oxygen saturations, carbon dioxide levels in arterial blood gases, and how hard the patient is working to breathe.

What does a successful ECMO weaning trial look like?

Before removing ECMO, the team will typically perform a formal weaning trial, where the ECMO circuit is clamped, or flows are reduced to a minimum, while the patient is on ventilation support alone. If the patient maintains adequate oxygen saturations and blood gas values during this trial — usually over several hours — it indicates that decannulation, meaning removal of the ECMO cannulas, is safe.

This whole process from starting ECMO to successful decannulation can take anywhere from 1 to 4 weeks for severe pneumonia cases, and sometimes longer. Your sister, Donna, has only been on ECMO for 5 days. It is genuinely too early to know whether she will wean successfully, but the fact that she’s still alive and receiving treatment means there is still a chance. Once again, 5 days in ICU,or 5 days in ECMO is not a very long time.

Weaning off the ventilator after VV ECMO — what does that look like?

Coming off ECMO doesn’t automatically mean coming off the ventilator.  These are two separate processes, there are two separate issues, and it is important you understand this, Donna.

After VV ECMO is successfully removed, your sister will still need the ventilator to support her breathing until her respiratory muscles are strong enough to breathe independently. Ventilator weaning after a prolonged ECMO run for severe pneumonia is its own challenge for several reasons.

Number one, respiratory muscle weakness. Prolonged sedation and critical illness cause significant deconditioning of all muscles, including the diaphragm and the intercostal muscles used for breathing. Your sister will have lost muscle strength simply from being critically ill and sedated.

Number two, residual lung injury. Even after pneumonia is treated, the lungs may still carry some degree of injury. This is known as fibrosis, or post-infectious lung changes, and it can limit how well the lungs function, even after recovery.

Number three, delirium and cognitive impairment. Prolonged Intensive Care Unit (ICU) stays, sedation, and critical illness frequently cause Intensive Care Unit (ICU) delirium, which can affect a patient’s ability to cooperate with breathing trials.

Ventilator weaning in this context is a slow, incremental process. The team will progressively reduce the level of ventilation support, moving from fully controlled ventilation to assisted ventilation modes, where your sister triggers each breath herself, and then to spontaneous breathing trials, where she breathes with minimal or no ventilator support through the endotracheal tube.

Will your sister need a tracheostomy?

Donna, this is a very important question. I want to answer it to the best of my abilities, because it’s something you probably don’t have on your radar. But it is very likely that this situation and question will come up as your sister goes along.

If your sister requires prolonged ventilation support — which is quite likely given that she has been on VV ECMO for severe pneumonia — she will almost certainly need a tracheostomy. A tracheostomy is a surgical opening made into the windpipe, or trachea, through the front of the neck. A tube is inserted through this opening directly into the trachea, bypassing the mouth and throat entirely.

Here is why a tracheostomy is likely after prolonged ECMO and prolonged ventilation. An endotracheal tube — the tube currently going through your sister’s mouth or nose into her trachea and the lungs — cannot be left in place safely for more than about 2 weeks without risking significant damage to the vocal cords and trachea.

A tracheostomy is far better tolerated by the patient. It allows for reduced sedation requirements, which can actually help speed up the recovery process. A tracheostomy tube allows the patient to begin eating, drinking, and even communicating in some cases. It provides a stable, secure airway for long-term ventilation weaning.

Does a tracheostomy mean she can never come off the ventilator?

Absolutely not. A tracheostomy is a tool that supports the weaning process, not a sign that weaning has failed. Many patients with tracheostomies in the Intensive Care Unit (ICU) successfully wean off the ventilator completely over time. Once weaned, the tracheostomy tube can be downsized and eventually removed, and the stoma — the opening — typically closes on its own, in most cases.

However, it is also true that some patients with severe lung injury do not fully wean off the ventilator. In those cases, long-term ventilation at home — both invasive ventilation via tracheostomy or non-invasive ventilation, such as Bilevel Positive Airway Pressure (BiPAP) or Continuous Positive Airway Pressure (CPAP), with a mask — is a real possibility, but I will come back to this point in more detail shortly.

Why access to all medical records is critical for your sister right now

One of the most important things you and your family need to do right now, Donna, is to request full access to all of your sister’s medical records, including daily Intensive Care Unit (ICU) nursing and doctor’s notes, ventilator and ECMO parameters and trending data, arterial blood gases results and laboratory results, chest X-ray and Computed Tomography (CT) scan reports, microbiology results — what organism is causing the pneumonia and what antibiotics it is sensitive to — echocardiography and heart ultrasound results, all medication charts, all ventilation charts, and fluid balance charts. Leave no stone unturned.

Having access to this information is not about second-guessing the Intensive Care Unit (ICU) team. It is about understanding what is happening to your sister, tracking whether she’s improving or deteriorating, and being in a position to have truly informed conversations with the treating Intensive Care Unit (ICU) team.

In my extensive experience, families who have full access to the medical records and understand what they mean are far better equipped to advocate effectively for their loved ones. They can ask the right questions, they can push back if something doesn’t seem right, they can ensure that the plan of care aligns with what their loved ones would want.

You have every right to these medical records as the next of kin or designated medical power of attorney, and you should request them in writing today, if you have not done so already. We can then help you review the medical records as Intensive Care Unit (ICU) professionals, which is a critical step.

How a consulting call with the Intensive Care Unit (ICU) team will help your family

The Intensive Care Unit (ICU) team is busy and under enormous pressure. In my experience, Intensive Care Unit (ICU) families often leave family meetings feeling like they have not had their questions answered, do not fully understand what they have been told, or feel too overwhelmed in the moment to ask what they really want to know.

This is where my team and I at intensivecarehotline.com help you very fast. When you book a consulting call with me, we can look at reviewing all of your medical records with you in detail and explain what they mean in plain language, help you understand the ECMO and ventilator parameters and what progress or deterioration looks like, help you formulate the right questions to ask the Intensive Care Unit (ICU) team, join a family meeting or a call with the Intensive Care Unit (ICU) team and ask questions on your behalf or support you in asking them, help you understand the realistic trajectory for your sister’s recovery, and advocate for your sister’s best care and treatment interests with the Intensive Care Unit (ICU) team.

Having an experienced critical care registered nurse on your team — someone who speaks the language of the Intensive Care Unit (ICU), understands the clinical picture, and is not emotionally overwhelmed — can be a game changer for families in your situation. You certainly do not have to navigate this alone, Donna.

What if your sister cannot be weaned off the ventilator? Long-term options including home-based intensive care

I want to raise this point not to alarm you, but because it’s important that you and your family understand that there are options, even if your sister cannot be fully weaned off the ventilator. If your sister ends up needing long-term ventilation support or tracheostomy support — whether that is invasive ventilation with a tracheostomy where the ventilator is connected directly to the tracheostomy tube, or non-invasive ventilation such as Bilevel Positive Airway Pressure (BiPAP) or Continuous Positive Airway Pressure (CPAP), where a mask delivers pressurized breathing support without the need of a tracheostomy, or whether your sister needs long-term tracheostomy care even without ongoing ventilation support — she does not have to stay in hospital or in an Intensive Care Unit (ICU) indefinitely.

At Intensive Care at Home, we provide home-based intensive care. We specialize in exactly this. We have been providing high-acuity intensive home care for ventilator-dependent and tracheostomy-dependent patients since 2012, allowing patients to live at home in their own environment, surrounded by their family.

The services we provide through Intensive Care at Home include 24/7 specialist critical care registered nurses at home, invasive and non-invasive home ventilation management, and tracheostomy management and care. If you’re in Australia, we are also providing Level 2 and Level 3 National Disability Insurance Scheme (NDIS) support coordination to help you navigate National Disability Insurance Scheme (NDIS) funding for eligible clients. It can also include palliative care in the home setting for those for whom comfort and quality of life is the primary goal.

The goal of Intensive Care at Home is to keep patients like your sister out of the Intensive Care Unit (ICU) — predictably and permanently — at home, where quality of life is so much greater, and where the family can be truly present and involved in care. Even if your sister’s situation is very complex, we have the clinical expertise to support your sister at home. I encourage you, as a next step, to look at Intensive Care at Home  learn more on our website.

My practical advice for you and your family, Donna — what to do next

Number one, request all medical records in writing today. Remember, you are entitled to them. Understanding what is happening to your sister is the foundation of everything else. 

Number two, ask for a formal family meeting with the Intensive Care Unit (ICU) consultant and the Intensive Care Unit (ICU) team, and have myself be present with you, so they are not going to walk all over you, and you know what to ask for, and you know how to prepare, and you know what questions to ask. We will ask specifically about the plan for ECMO and ventilation weaning, and whether a tracheostomy is being planned.

Number three, ask about the cause of the pneumonia. Is it bacterial, viral, or fungal? What treatment is she on, and is the microbiology showing any resistance?

Number four, ask about timelines. What are the markers they are watching, and to know when weaning can begin? What progress has been made in the last 5 days?

And contact me at intensivecarehotline.com, book a consulting call with me so that we can review the medical records with you and help you understand exactly where your sister stands and what the realistic options are. If you’re worried about your sister on ECMO in the Intensive Care Unit (ICU) and you need expert guidance, we are here for you at intensivecarehotline.com. We offer one-on-one consulting calls, medical record reviews, and direct advocacy with Intensive Care Unit (ICU) teams for families in exactly your situation.

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.

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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.