What to Expect When Your Child Is on ECMO: Day-by-Day Life in the PICU

Medicine Made Simple Summary

When a child is on ECMO, day-to-day life in the PICU involves close monitoring, careful adjustments to machines, and constant attention from nurses, doctors, and specialists. Children may be sedated or lightly awake depending on their condition. Families can expect regular blood tests, daily ultrasounds or X-rays, medication changes, and updates from the care team. The room will have several machines, but each has a purpose. Knowing what happens each day helps parents feel more prepared as their child receives life-saving heart or lung support.

Why Understanding ECMO Care Helps Parents Stay Grounded

When a child is placed on ECMO, everything changes very quickly. The environment becomes filled with machines, alarms, tubes, and nonstop activity. Parents often describe this moment as overwhelming. They feel frightened by the complexity of the equipment and unsure of what each day will bring. Understanding what a typical day looks like in the PICU during ECMO support helps reduce fear and gives families a sense of control.

ECMO is a powerful life-support system used only when a child’s heart or lungs need help doing their essential work. While the treatment is complex, the daily routine has a pattern. With time, parents learn what to expect and feel more comfortable in the ICU environment.

A Quick Refresher: What ECMO Does

Why ECMO Is Needed

ECMO temporarily takes over the work of the heart, the lungs, or both. It pumps blood out of the body, adds oxygen, removes carbon dioxide, and returns the blood to the child. This allows the organs to rest and heal while doctors treat the underlying condition.

Two Types of ECMO Determine Daily Care

There are two main ECMO types.

• VV ECMO supports lung function.
• VA ECMO supports both heart and lung function.

The type of ECMO influences the level of monitoring and the child’s expected recovery path, but both require similar daily care in the PICU.

The First Day on ECMO: What Happens After Cannulation

• Stabilizing the Child: The moment a child is connected to ECMO is called cannulation. Once the cannulas are in place and the machine begins working, the team stabilizes the child. This includes adjusting pump flow, oxygen levels, and ventilator settings. The first few hours are often the busiest. The medical team watches closely for changes in blood pressure, oxygen levels, and heart function.
• Explaining the Equipment to Parents: Parents will see the ECMO pump, the oxygenator, the ventilator, monitors, medication pumps, and tubes. Nurses often walk parents through what everything does. Understanding the purpose of each machine helps reduce fear.
• Sedation and Comfort: Most children are sedated during the first day. Sedation keeps them calm and comfortable, prevents movement that might affect the cannulas, and reduces stress on the body.

Day-by-Day Routine: Understanding Life on ECMO

Morning: Assessment and Planning

Every morning, the PICU team gathers for rounds. Doctors, nurses, respiratory therapists, and ECMO specialists review

• The child’s overnight progress
• Blood test results
• Ventilator settings
• ECMO flow and oxygenation levels
• Medications
• Organ function

The team discusses goals for the day. This may include reducing ECMO flow, adjusting medications, or trying new treatments.

Daily Imaging

Most children on ECMO receive daily chest X-rays or ultrasounds. These images help the team monitor lung recovery, check cannula placement, and detect any fluid or swelling.

Regular Blood Tests

Multiple blood tests are done each day. These measure oxygen levels, clotting factors, electrolytes, and organ performance. ECMO affects the body’s blood clotting system, so doctors carefully balance the risk of clotting and bleeding using medications.

Ventilator Adjustments

Even with ECMO, the child usually remains on a ventilator. Settings are kept low to allow the lungs to rest. As the lungs recover, ventilator support may be slowly increased.

Understanding the Machines at the Bedside

• The ECMO Pump: This pump moves blood through the ECMO circuit. Parents may notice the blood flowing through clear tubes. The pump speed and flow determine how much support the child receives.
• The Oxygenator: This device acts like an artificial lung. It adds oxygen to the blood and removes carbon dioxide. Doctors monitor how well the oxygenator is working and replace it if needed.
• The Monitors: Several screens track the child's heart rate, blood pressure, oxygen saturation, temperature, and ECMO circuit pressures. Alarms sound when numbers move outside safe ranges, reminding the team to check the child.
• Medication Pumps: Children on ECMO usually need multiple medicines to manage pain, sedation, blood pressure, clotting, and infection control. Infusion pumps deliver these medications with precision.

What Parents Can Do at the Bedside

• Being Present and Involved: Even with all the equipment, parents play a vital role. Your presence comforts your child. You can talk, touch gently, read stories, and participate in care when allowed. Small moments of connection help you feel closer to your child during a stressful time.
• Asking Questions: The ICU team is used to parents being frightened or confused. Asking questions helps you understand what is happening and builds trust. No question is too small when your child is critically ill.
• Keeping a Journal: Many parents keep a journal of daily updates. This helps track progress and provides emotional support during the long ICU stay.

How Children Are Kept Comfortable on ECMO

• Sedation and Pain Management: Most children require sedation to stay calm and safe. The team adjusts sedation based on the child’s recovery stage. Some children remain deeply asleep; others are kept lightly awake once stable.
• Managing Swelling and Fluid Balance: Children on ECMO often retain fluid. The team may give medicines to remove excess fluid. Parents may notice swelling in the face or limbs. This is expected and monitored closely.
• Preventing Skin and Muscle Weakness: Daily repositioning helps prevent pressure sores and stiffness. Physical therapists may gently stretch or move the child’s limbs when appropriate.

Common Events During the ECMO Course

Changes in Blood Clotting

ECMO circuits can form clots, so children receive medications to thin the blood. This requires careful monitoring to avoid bleeding or other complications. Adjustments are common and expected.

Infections

Because ECMO involves large tubes in blood vessels, infection prevention is a major priority. The team follows strict sterile procedures and monitors for any signs of infection.

Organ Support

Children may need additional treatments such as

• Kidney dialysis
• Blood transfusions
• Nutrition through IV or feeding tubes

All of these support organ healing during ECMO.

Communication With the Care Team

• Daily Updates: The team shares updates with parents each day. They explain lab results, treatment changes, and goals for the next 24 hours.
• Family Meetings: For long ECMO runs or complex cases, families may meet with the entire care team. These meetings help provide clarity, discuss outlook, and answer detailed questions.

Signs of Recovery While on ECMO

• Improving Lung Function: In VV ECMO, improvements may include better chest X-ray results, lower ventilator needs, and more stable oxygen levels.
• Improving Heart Function: In VA ECMO, improvements may include stronger heart contractions on ultrasound, higher blood pressure without medication, and better pulses.
• Decreasing ECMO Support: The team gradually reduces the ECMO pump flow as the child’s organs begin doing more work on their own.

The Process of Weaning Off ECMO

• Trial Off the Machine: When the child shows strong signs of recovery, the team may perform a “trial off.” They temporarily lower ECMO support to see how well the child’s heart and lungs function.
• Decannulation: If the trial off goes well, the cannulas are removed. This is called decannulation. It is done in a controlled setting, often in the ICU or operating room. After decannulation, the child stays closely monitored to ensure the heart and lungs continue to work well.
• Early Steps After ECMO: Children may still need ventilator support, physical therapy, nutrition support, and medications. Recovery continues for days to weeks.

Conclusion

If your child is currently on ECMO or may need ECMO soon, ask your care team to explain the day-to-day care plan. Understanding what happens in the PICU helps you feel more secure, more informed, and more connected to your child during this difficult time. The medical team is always available to answer questions and guide you through each step of the journey.