Your loved one's time on ECMO is going to be a roller coaster of activity and emotions. The most important thing for you as a spouse/family member or friend is to stay positive, get rest, eat, and do whatever you can to take care of yourself. Your loved one is being well-supported and will need you to be at your best when it's time to come off ECMO. While on ECMO, here are a few things to expect and some commonly asked questions.

While a patient is on ECMO, there will be a number of normal daily activities that your doctors, nurses, and ECMO specialists will be doing. These are done to make sure that your loved one is making progress, and that there is nothing that the care team is overlooking in their efforts to help get him/her better. Patients on ECMO will typically receive:

These are used by clinicians (doctors, nurses, ECMO Specialists, etc.) to monitor the progress of lung healing. During the first days of ECMO, it's very likely that the x-ray will look like a white blur. As the days progress, small slivers of black will creep into the picture, indicating that the lungs are beginning to fill with air again. Chest X-rays are also useful for your doctors to figure out when to increase the ventilator and to watch out for any side effects like a pneumothorax (new-moe-thor-ax), which is a medical term for when air gets outside the lungs and trapped in the chest. If this happens, the doctors will may need to place a tube to drain the air and let the lungs expand to fill that space.

Your loved one will have lots of blood drawn for labs so that the doctors can monitor everything they can about organ function, infection status, and recovery. Don't worry, there is a lot of blood in the ECMO machine and your doctors will not take more blood than they need. Drawing blood from the ECMO circuit is painless and requires no needles or anything harmful. In fact, it's much easier for your doctors and nurses to get blood from the ECMO circuit than typical IV lines! Some centers do draw labs from the patient's lines or catheters when the patient has catheters that will allow it.

For the first several days to weeks on ECMO, your loved one will not need to eat because all of his/her nutrition (all the vitamins, minerals, and calories that he or she needs to help their body recover) is given through an IV. This is because when people are ill and their bodies are not able to provide enough oxygen or blood to all their tissues, the body tries to conserve what it can by reducing blood flow to specific organs to ensure that the most vital organs (heart and brain) get the most blood. Because of this, the stomach and intestines may experience reduced blood flow in the early periods after going on ECMO. This is why we do not feed them. However, as your loved one progresses and demonstrates signs of recovery, the doctors will begin to introduce liquid food into the stomach or intestines through a feeding tube placed in their nose call a nasogastric (nay-so-gas-trick) or NG tube.

Many families worry about the pain or distress that their loved one is experiencing from being so sick and having so many procedures performed. Your doctors and nurses are will monitor for any signs that they are feeling pain and use specific drugs to help manage this. The ultimate goal for us as medical professionals is to have your loved one be able to sleep and wake in normal cycles and interact with the world around them (including you!) without feeling any pain or anxiety. The initial procedure to place your loved one on ECMO will require general anesthesia so that they are completely asleep, unable to feel any pain, and unable to remember what is happening. Afterwards, they will begin to wake up and your doctors will provide sedation, pain, and anti-anxiety medicines as needed to keep him/her comfortable. Your nurses are highly trained to look for signs of pain and distress and will alert the doctors with any changes. It's important that you are there to talk to and comfort your loved one. They can hear your voice, they can see you when they open their eyes, and they can feel your touch, which will be as comforting to them as it is for you.

ECMO is a large machine and it needs to be filled with blood to help it work. Throughout the course of the ECMO treatment, your loved one will most likely receive lots of blood and blood products to make sure that they are able to get enough oxygen to their organs, and to make sure that they can heal the sites where the surgeons had to place the ECMO cannula. It is completely normal to receive these blood products and not necessarily a bad sign or cause for immediate concern. If your hospital allows, you may donate blood to be used for your loved one or to be provided in the general pool so that others may benefit from this life-saving therapy as much as your loved one is benefitting from it.

It is important to understand that ECMO is not a cure for any disease. Rather, it is a tool that doctors can use to support a patient so that they can have the time to receive the medicines that will ultimately help them heal. When your loved one first goes on ECMO, he or she will be on many medications with many complicated names. He or she will likely receive antibiotics to prevent infection, pain and sedation medicine to keep them comfortable, diuretics (dye-your-etics) to help their kidneys make urine, and other types of drugs that will depend on the reason that your loved one was placed on ECMO. Over time, as he/she begins to get better, many of these medicines will no longer be needed, which is a good thing!

This is probably the most important question that family members have, and the hardest one for doctors to answer. Each patient is different and will require different amounts of time to be on ECMO depending on why they needed ECMO in the first place. Some patients are able to come off ECMO after less than 24 hours, and some patients need to be on ECMO for over 30 days. Most commonly, patients are on VA ECMO for 5-10 days and VV ECMO for 10-14 days but these are just averages, and are not meant to be reflective of your loved one's condition. The most important thing to remember is that your doctors are working hard to get him or her off of ECMO as soon as possible. While we know that ECMO can provide a lot of benefits to patients and we as practitioners feel that we can provide safe ECMO, there are some risks and getting off ECMO is the only way to completely avoid these risks.

While your loved one is on ECMO, they will for the most part be required to lay on their back in bed. The longer that they are confined to bed, the longer it will take to get them to be back to normal after they are better. If we don't use our muscles, then they get smaller (If you don't use it, you lose it!). As we have learned that patients require different times on ECMO, and as the length of time on ECMO progresses, it may become necessary to provide physical therapy to help your loved one maintain their muscles. Specially trained members of the healthcare team, called physical and occupational therapists, will provide this service. At first, it may mean simple passive range of motion exercises where the physical therapists move your loved one's arms and legs for them. Over time, they may ask him or her to use their muscles to push back on the therapist. Sometimes when a patient has a particular type of ECMO cannula, and your healthcare team deems it safe and necessary, your loved one may even be able to sit up in bed and eventually get up and walk while on ECMO. This is a relatively new step (no pun intended) for ECMO caregivers and we are excited at the opportunity to help patients get back to their normal selves while providing them this life-saving therapy. As always, the goal is to provide the safest, best ECMO care we can. If your doctors have any concerns about the safety of adding physical therapy to the overall care, they will not add this phase of their care until such time as they deem it safe and necessary.