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A moment of grace

by Dora

It had been a long six weeks. There had been hope and despair; moments of quiet peace and tears of heartbreak; memories recounted and relived, talks with social workers, chaplains and a myriad consulting physicians. There was a second opinion with the founding father of ECMO. And a mariachi band. But I’m getting ahead of myself.

Gary came into the hospital in September. No history of illness except a mild touch of asthma. A roly-poly twelve year old who excelled at school, was the stand-in older brother to his 4 year old niece, and a comfort to his mother, whose other son was paying his juvenile dues to society at a work camp. Gary had been transferred to our unit for respiratory failure. After spending time in two other hospitals, where his breathing became steadily worse, he came to us intubated, breathing with the help of a ventilator, and sedated. I was surprised to receive the call at home to see if I could come in to do ECMO (a therapy involving an artificial lung), since I knew that the attending that week was not a fan. But Gary was so sick that there was no question that he needed it.

By the time I got to the hospital, Gary was all set up. The bed was raised as high as it could be, and he was resting on a special air mattress. There was a cannula from his neck draining dark colored blood into the ECMO tubing. It flowed through the machine until it got to the raceway, where it was forcibly pumped through the oxygenator. Then it was warmed and the crimson blood, bright because the carbon dioxide had been replaced with life giving oxygen, flowed back through a cannula in his groin. He was sedated, but lightly. As his sisters or mother stood at the head of his bed, he would nod or shake his head, a very little, to answer if he was uncomfortable.

The surgeons told us to settle in for a long run. Maybe six weeks. This wasn’t a surprise, and so we settled. In the meantime, Gary’s family brought in pictures to put on the walls, his mother brought his favorite pillow, and they recounted stories about Gary, to pass the long hours. We heard about how Gary would entertain his four year old niece even as he tried to do his homework. We saw the video where one sister pushed his face into his last birthday cake. We got to know the family. We heard about how he missed his brother John, who was in juvenile detention. Rosie was expecting a baby, and wasn’t couldn’t visit until she’d gotten her flu shots. Ava was trying to balance the responsibility of her young children, and learning as much about Gary’s condition and therapies as possible. And Tanya was going to school part time and working full time, but had her aims set on being a school counsellor.

And so we settled, but not entirely. A week into the run, we started having trouble with the ECMO circuit. We just weren’t getting enough blood flow. The surgeons cut in another cannula, and it helped. The machine was doing the job of cleaning and oxygenating Gary’s blood. But whenever we had to momentarily stop it to move or change the tubing, we could see that Gary’s lungs weren’t getting better, and it worried us.

About three weeks in, we really started getting worried. Data was rolling in from Australia, where they were just finishing the winter season. Their ECMO survival rate was good, about 70%. However, the runs were much shorter, about ten days. The team started conferencing more frequently with the family. The data looked bad. Gary’s lungs were not getting better, and he had developed complications with bleeding. The likelihood of his survival looked dimmer with each passing day. And yet we still hoped. Family and friends came to the hospital to donate so that we had a ready supply to replenish his blood.

Week four passed …

At week five, the team had that hard conversation with the family. His lungs were not improving. He had bleeding in his respiratory and genitourinary tracts. And he was not a candidate for a lung transplant. The family was resistant. They wanted a second opinion, which we were happy to oblige. They discovered a long-lost connection with the inventor of ECMO. He called in and spoke with our attending physician; a different one from above, who has worked extensively with ECMO; and agreed with the decision. We were set to stop the ECMO therapy on Monday, at which point we expected Gary to expire.

I came in Monday, heavy in my heart. We’d gotten close to the family, and understood their pain. And yet, there as a new wrinkle. The family still hadn’t told Gary’s brother about his condition. John was serving time in a juvenile detention center. The family was trying to get John released so that he would be able to be at the hospital when we removed Gary from life support. Specialists from the palliative care team and the social work team spoke with the director of the center, but he was adamantly against releasing John at all. Call were made to the lawyers and the court house to see what could be done. To no avail. Gary’s family made the trip to visit John and tell him the news. Such sorrow. John acknowledged that his own actions had put him out of Gary’s reach, but was still hopeful that maybe the director would let him out for the funeral.

And so, it came to the day. The parish priest and many friends came in to say rosaries and goodbye. We let in as many as the room would hold. They sang, prayed and said rosaries, as their fingers counted across the beads.

Finally, it was just the family. We dimmed the monitors and the lights. We put chairs and boxes of tissues in the room. We gave Gary extra medicine for pain and sedation. And then we turned off the machine and ventilator. The silence was terrible for one extraordinary moment. And then the crying began.

Hours later, the family left. Sorrowing, sad, and yet with a thin layer of peace. We hugged them and tried to whisper words of peace. “Gary was so loved. Some people go their entire lives without being loved as you loved him. Be good to each other. He would want that.”

And then the cleanup began. We cleaned Gary up as best we could, then moved him to the morgue. Then we cleaned the ECMO machine and moved it back to the storage area. And then we started on the room that had housed him for six weeks. As we were throwing unused supplies away, my coworker Tina said to me, “Isn’t it strange, that he always knew?”

“Hmmm?” I asked.

“Didn’t I tell you?”

“No. What?”

Turns out that Gary had had a premonition that he would be called home. Even before he came to our hospital. Before he was even intubated. He had spoken to his mother, trying to comfort her. He knew that he would shortly, “be going home to be with God.” He told her that he would be okay, but that she would need to be strong.

A passage from a favorite book came to me.

Life held a deeper meaning, a deeper purpose. On the surface it would go on just the same; but the deeps had been stirred. It must not be with her as with poor butterfly Ruby. When she came to the end of one life, it must not be to face the next with the shrinking terror of something wholly different – something for which unaccustomed thought and ideal had unfitted her. The little things of life, sweet and excellent in their place, must not be the things lived for; the highest must be sought and followed; the life of heaven must be begun here on earth.

I went to the funeral just the other day. It had been delayed over a week. The family held a carwash to raise money. We took up a collection at the hospital. Finally it came. A Catholic service in Spanish. There was no eulogy, and I only understood one word in three. But the tone was sincere and peaceful. And there was a mariachi band that played in the spaces between the priest’s speakings.

After the service, I spoke to and hugged them all. And as Tanya and I walked to the cars, I gave her an extra squeeze. They’d had the viewing the night before, but he looked so different that she’d turned away from the casket and focused instead on the pictures of his happy life. Of course. His spirit had left its clothes of clay. I turned to look at her. “I’m hoping all kinds of good things for you all. That Rosie has a healthy baby. That Ava marries Harry. That John comes out of the detention center and turns his life around. That you finish school and become an awesome counsellor. So many good things ahead of you all. Love each other and be happy. Gary would want that.”

I’ve already had the hard conversationa with my parents and siblings. We’re all pretty much of the same mind. We have no need to be tied to these imperfect clothes of clay if they don’t let us give and receive love. Our souls will outlast this mortal life, and when our bodies are ready to return to dust, our spirits are eager to move on, until we can experience life in a more perfect way. In the meantime, “the life of heaven must be begun here on earth.”

Dora

Dora is a pediatric critical care nurse. Therapy to alleviate the stress in her professional life include traveling around the world, reading, partner dancing and hosting dinner parties.

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10 Responses

  1. Caroline says:

    Wow, Dora. This made me teary. Thank you so much for sharing this story and your insights.

  2. tara says:

    Beautifully written Dora, thank you. Which book is that quote from?

  3. Deborah says:

    So hard and beautiful, Dora. Thank you.

  4. EmilyCC says:

    What a wonderful and sad story. It sounds like you did some excellent ministering to this family, aiding them in their healing.

  5. Alisa says:

    I had the same impression EmilyCC did – that you get to bless this family at a time of transition, which has a certain holiness around it. What a great story about observation, waiting, hoping, and comfort.

  6. Brooke says:

    Amazing. The things you deal with and experience because of your career are quite incredible. Thanks for sharing, Dora.

  7. Kelly Ann says:

    Dora, this is beautiful. Thank you for sharing your experience. Makes me wish I had gone with medicine instead of science. I don’t know that I could do it though over and over again.

  8. Zenaida says:

    I deeply admire your ability to work so closely with children who are so sick, and especially those who pass on. It’s such a beautiful thing, and you handle it with such grace and eloquence. Thank you!

  9. Dora says:

    Thank you all for your kinds words. I did feel like I was ministering to them. However, it was a team effort. Nurses, physicians, chaplains, social workers, even the cleaning staff. There is so much we can all do to help each other.

    Tara, that particular quote comes from _Anne of the Island,_ by LM Montgomery. So many good nuggets tucked into the books from my childhood.

  1. February 7, 2015

    […] tells a story of moments of grace that occurred surrounding the passing of a young […]

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