When Your Spouse Is on ECMO: A Caregiver's Story

By Maureen G. Dodge

My husband, Nick, spent 241 days on ECMO and received a double lung transplant. I was beside him almost every day for eleven months. If your husband or wife is on ECMO right now, this is what it was like for me.

The night I drove him to the ER

When he went to urgent care, they diagnosed him with COVID and sent him home. He was constantly coughing and vomiting. At 3:30 a.m., I noticed Nick was having trouble breathing. I wasn't going to let things get worse, so I insisted we go to the ER.

He had to take a few steps, catch his breath, then take a few more until he reached the bottom of the stairs and got into the car. The whole ride was nerve racking as I tried to watch him and the road. When we arrived, I had to go inside and ask someone to bring out a wheelchair, because he couldn't walk on his own without running out of breath.

Visitors were not allowed at the time, so I frequently called the hospital for updates.

When they told me to get ready

After about a week, the visitor policy was revised to allow one person inside the room. After only being able to visit him for 2 days following a week apart, he was intubated.

At first, I was in tears and terrified, but as I prayed, I found strength and courage. I refused to give up or believe this was goodbye. I stayed by his side, constantly asking the nurses and doctors: "What is in the IVs?" "What do the readings on the machines mean?" I needed to understand exactly what they were doing and how he was progressing.

I sat in the chair next to his bed day after day, listening to the ventilator and IV pump beep as the bag emptied. I watched other families come and go, visiting loved ones or saying goodbye, some only through a window outside. It was heartbreaking. I vowed to fight for Nick with everything I had.

About a week later, his condition began to worsen. His oxygen levels remained unstable, even at the highest setting. At one point, the doctors told me there was nothing more they could do and advised me to get ready. I prayed deeply, as did our family and friends. I asked the nurses to contact other hospitals to try to arrange a transfer, hoping that a different treatment or transplant might still be an option. I refused to accept this as the end.

The day ECMO came

On June 4, 2021, I received a call in the morning informing me that Nick's oxygen levels were dangerously low and that I should come immediately. When I arrived, a perfusionist and a doctor were in the room, and they told me they had another way for him to breathe. It was called ECMO. A surgeon was available to insert the cannula, and they planned to transfer him to Christ Medical Center. Tell me that isn't a miracle! They moved him that day, giving my love another chance.

Our oldest daughter, Sydney, and I drove to the hospital after his transfer. There was heavy traffic, and I noticed a truck with a sticker that caught my eye: "John 3:16." This verse gave me the strength and faith I needed. On the second day at Christ Medical Center, just as Sydney was about to stand up from the recliner, she noticed something written on the side: John 3:16. I knew this was where Nick was meant to be.

Nick was connected to several IV lines, so I took notes on everything being administered to him.

When he woke up

Eventually, Nick was taken off the ventilator and regained consciousness. I'll never forget his blue eyes as he looked up at me. He was in a fog and didn't recognize me, but I didn't care. He was awake and off that ventilator. It took some time for his voice to recover. Communication was frustrating for everyone involved.

The long middle

Weeks turned into months as we waited for improvement. Nick showed signs of progress, only to face setbacks and have to start over again. The doctors used various treatments to help him cough up the fluids in his lungs and suction them out. They often woke him in the middle of the night or during his naps to perform these procedures.

I've never seen a stronger man than my husband. I am incredibly grateful to the nurses. They had such a great sense of humor! When he had to stand on the Kreg bed and walk through the hallways for physical therapy, the nurses were his champions, cheering him on and playing his favorite music. On the days when setbacks occurred, they stayed positive and even comforted me when I was upset.

For months, Nick refused to turn on the TV. I would walk into his room and find him either with his eyes closed or staring out the window. Sometimes, I caught him talking to the air as if someone were there with him. I understand that much of this was due to the medications and ICU delirium.

When transplant was the last option

By October 2021, I entered Nick's room and found him upset and depressed. The doctors told him he probably needed a lung transplant. The ECMO was meant to be a short term solution, but he had been on it much longer than anyone expected, and his lungs weren't improving. We were both anxious and, honestly, scared.

The hospital began requesting transfers for transplant evaluations. They even contacted out of state hospitals. There was no availability, and COVID restrictions tightened once again.

After Christmas in December 2021, they banned visitors again. I could only communicate with him by phone and FaceTime, and I was very grateful for that technology. We missed celebrating New Year's Eve together. I wouldn't see him in person again until Northwestern Medicine called on January 19, 2022, and he was transferred there.

Transplant day

On the evening of January 30, 2022, the lung team told us they had found a perfect match. We were stunned. I prayed for the donor and his family, and I continue to thank God for this gift every day.

My daughter and I arrived at the hospital at 6 a.m. and were able to see him before he went into surgery. We stayed, getting text updates from the doctors in the operating room. After a few hours, one lung was completed. A few hours later, the second was finished. The surgery was a success!

Bringing him home

Whenever I entered his room at Shirley Ryan AbilityLab, I was always amazed by Nick's achievements. He worked hard to become self sufficient again. I'll never forget the triumphant look on his face when I walked in and saw him standing up from the wheelchair without help.

On March 16, 2022, it was finally time to go home. We had to return to Northwestern first, where they sat us down to discuss each medication and its significance. We also met with a nutritionist.

The first few weeks were tough as we worked to establish a routine. We installed handrails and a temporary ramp for his wheelchair. I learned from the PT at Shirley Ryan how to lift Nick if he fell, and I taught my daughters how to do it. This proved helpful when Nick lost his balance a few times. In January 2023, he stopped being a backseat driver and was able to drive again.

From Nick

Maureen was by my side almost every day for eleven months. The one way drive took an hour, sometimes longer. She put 12,000 miles on the car. When I was too weak to feed myself, she fed me. Today, she still organizes my pills every day.

"She is the truest example of unconditional love I have known. I don't believe I would be here without her."

Keep reading

Can You Survive Months on ECMO? My 241 Days on ECMO

What It's Like to Wake Up After Months on Life Support

Read the full story

A Life Returned: How Love, Loss, and a Stranger's Gift Gave Me a Second Chance, by Nicholas P. Dodge and Maureen G. Dodge, is the full account of Nick's 241 days on ECMO, his double lung transplant, and the long road home. We wrote it together.

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