At about 10:30 p.m. on February 5—the night of the Super Bowl, after the Patriots had just lost a close game and New England football fans everywhere were shaking their heads in disappointment—a telephone rang at a home in Camden. Natalie Ames answered. “This is Dr. *** calling. I think we’ve found Zeke a liver.”
Natalie, Zeke’s mother, later commented, “I’d been warned that sometimes they call when it’s still a ‘maybe,’ so I actually asked the doctor outright, ‘does this mean we should get in the car and come down?’ I must have sounded half asleep. He said, ‘Yes. How soon can you get here?'”
Ezekiel Bryant, of Matinicus, Camden, and now (temporarily) Boston, is 11 years old. He and his mom related the story of that evening from Zeke’s hospital room in Boston: “In half an hour we were on the road. Kate (Zeke’s aunt) came over from Hope to stay with Isabella and Gardner (Ezekiel’s sister and brother). We got here at about 2:30 a.m.”
Zeke went through five grades at the one-room school on Matinicus Island, which means skiing at Sugarloaf, discussing books over Skype with other island students from all over the coast of Maine, combing the beaches for science, acting in the Christmas plays and, of course, enjoying the fun (and putting up with the aggravation) of island life, where transportation to the mainland is often sabotaged by weather. Last fall, his doctors finally insisted: Ezekiel had to be on the mainland. He has spent his life interacting with medical professionals, and knows more than a little bit about the health care system. Zeke has cystic fibrosis and diabetes, and a few months ago, his liver began to fail.
His family quickly moved to the mainland, living for a while with relatives until a rental in Camden could be found. Ezekiel was put on the list for a liver transplant, but nobody could gauge when that might actually happen.
On February 7, after a 10-hour operation, Natalie sent an e-mail to the many friends and relatives who had been waiting for word: “Zeke is out of surgery, breathing on his own, new liver functioning, and gave us a thumbs-up. Looking good so far. We are so grateful.”
“So, what do you do all day around here?” I half-jokingly asked Zeke—taking a cue from what visitors frequently ask islanders—when I had the chance to visit him at Boston Children’s a month after the surgery. “I play Legos, I watch TV, I play my DS (video games), I keep up with my meds. It’s a lot of doctors and nurses coming in for things.”
Ezekiel is a sports fan. As we visited, the Celtics were squeaking out a win in overtime. The game seemed a welcome distraction as a nurse changed one of his many dressings.
I asked if he had been doing schoolwork. “Not right now!” he smiled. His mother added, “Well, there’s the school of diabetes, the school of transplant management—that’s a lot of math and science if you think about it.” Very true; Ezekiel is old for his years in some ways, and has become quite expert in some aspects of the medical care. Cystic fibrosis is a full-time job, in some ways, and there is a lot to learn and understand. One of Zeke’s nurses observed that, “He’s a good advocate for himself.”
His room is filled with Lego constructions, cards and balloons, and the hundred paper cranes made for him by his Matinicus classmates. Boston Children’s Hospital is an incredible place. Natalie mentioned that people from all over the world come here for major surgery. Perhaps Zeke counts as a patient “from overseas.”
Kidding aside, a major organ transplant is not a simple thing, and Ezekiel has had to remain in the hospital for several weeks following the transplant. He will hopefully have been discharged by time this gets to print, but he is supposed to remain in Boston for a couple of weeks beyond that, to be near his doctors.