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Two weeks ago, Hayes Boykin turned the corner.
The 4-year-old Wilson boy had a successful kidney transplant Nov. 14.
For Hayes, whose nickname is Cheeks, the last 11 months have included 10 surgeries, three biopsies, three chemotherapy treatments, 10 blood transfusions, six complete blood plasma infusions, thousands of hours of dialysis and the pounding experience of a life-threatening blood pressure of 214 over 137.
Hayes’ parents — Jeff Boykin, a Wilson Police Department K-9 officer, and Elisabeth Boykin, who works at the ECU School of Dental Medicine — have been through the ringer.
“It was truly a year I’ve never been more thankful for in my life,” said Elisabeth Boykin, seeing her son’s recovery since the transplant.
Last Dec. 13, Elisabeth Boykin took her son to the doctor for what she thought was a regular cold.
“He wasn’t feeling good. He had thee little red bumps on the bottoms of his legs,” Boykin said. “The doctors office did a few tests. They decided that he was dehydrated but they needed to have different tests done.”
The following day, when Hayes’ condition had not improved, a mother’s instinct kicked in.
“She was just like ‘I don’t feel right about it this time,’” Jeff Boykin said. “It’s not strep throat. It’s not an ear infection. It’s just something different this time, so she goes back to the doctor and ultimately, that decision saved his life.”
The family was sent to WakeMed where medical staffers took X-rays and ultrasounds and completed lab work.
“It was in the lab work that they discovered that something was totally off,” Elisabeth Boykin said.
Hayes’ blood area nitrogen, creatinine and potassium levels were critically high.
Doctors made Hayes immediately take an ambulance to UNC Hospitals, where he was admitted to the Pediatric Intensive Care Unit.
“Then we find out that he’s in complete kidney failure,” Jeff Boykin said. “We would have had no idea had we not gone back to the doctor.”
Doctors told the family that Hayes would have to be put on dialysis immediately.
“He’s deteriorating in front of us,” Jeff Boykin said. “He doesn’t know it and we didn’t know it.”
Hayes still had a childlike spirit about him at the time, but his parents said that quickly changed.
HOOKED TO A MACHINE
Doctors ran a femoral catheter in the little boy and soon rolled in the dialysis machine.
Hayes was given medicines to relax him enough so he could lay there calmly through the procedures.
“He was kind of out of it for several weeks while they kept him on the medicine, but also within those several weeks, you could start to see the gradual changes of him,” Jeff Boykin said.
Hayes started swelling up, retaining fluid faster than medical staff could pull it off with the machine and gained 20 pounds in a couple weeks.
“He was to the point that he really didn’t look like Hayes anymore,” Jeff Boykin said. “He really wasn’t communicating anything. He would just be short of breath. There was nothing we could do. It was the first time I ever felt helpless. Yes, we have got him at the hospital, but mama and daddy can’t make it better.”
The couple was at the hospital from Dec. 15 through Jan. 21.
A biopsy showed that his kidney function had fallen below 5%.
At the end of January, something changed and Hayes came off of dialysis.
“We were like thinking that things were better,” Jeff Boykin said.
Hayes was undergoing three-hour dialysis sessions three days a week.
“We thought he was going to recover. He was getting some function back,” Jeff Boykin said.
The family was able to go home for five or six days.
Hayes went his first outpatient kidney appointment at UNC.
When the couple headed toward Wilson, they made it as far as Zebulon when they got a call from the doctor saying to come back to the hospital to be admitted.
Blood work showed Hayes had taken a turn for the worst.
A few minutes after the family arrived at the hospital, Hayes had a kidney-related and blood pressure-related seizure.
The Boykins were at the hospital nonstop from Feb. 4 until March 19.
“We never came home again and we were in the intensive care unit for over 30 days,” Elisabeth Boykin said.
Then things got even worse. Hayes went on 24-hour dialysis for two weeks straight.
“You can imagine how that crushed our spirits,” Elisabeth Boykin said.
It was the beginning of another extended stay at the hospital and the Boykins were concerned about how this was affecting their other son, Lawson, a 10-year-old student at New Hope Elementary School.
“We missed Christmas and that’s hard to balance with a kid that doesn’t understand and a 10-year-old that wants his mom and dad at home,” Jeff Boykin said.
The doctor told the Boykins they had to start setting goals like saving Hayes’ other organs.
At this point, Hayes was now a chronic kidney disease patient.
“The goal is we are in it to save his life, do what we have to do to get him stabilized and out of ICU, control his blood pressure but basically take the fluid off of him,” Jeff Boykin said.“They removed 12 liters of fluid off of his body in 12 weeks.”
After Hayes came off the continuous dialysis, he got better enough to have dialysis treatments four days a week.
Hayes eventually got to a point where he was a candidate for peritoneal dialysis. It would be administered by his parents, who took a class to learn the procedure.
We administered it, me and her, every night, for seven months on PD dialysis,” Jeff Boykin said. “That’s a fluid exchange type of dialysis that is done while he sleeps at night.”
“Instead of doing the blood version like the hospital, this was done in the peritoneal tract. It’s fluid. So he had a little tubie in his little belly here,” Elisabeth Boykin said. “Every night we would go into the bedroom, shut the door, turn all the fans off, air conditioner, whatever was on, glove up, mask up, soak the ends of the tubes and set the machine up.”
“It was done seven days a week, eight hours a night. There was no off day,” Jeff Boykin said. “Every day was the same.”
The night treatment meant Hayes could be somewhat normal during he day.
“That being said, his immune system was still suppressed. He could get sick very easily,” Jeff Boykin said. “He had a very high risk of infection with his port. We had to do dressing changes daily and keep the site clean because if he ever lost access to that, essentially we were done. That was it.”
The peritoneal dialysis went for seven months from the middle of April to the beginning of November.
At this point, Elisabeth Boykin remained home but her husband had returned to work.
Jeff Boykin said there was no question Hayes should be considered for a kidney transplant.
“This is a young child,” Jeff Boykin said. “He’s not at the end. He’s at the beginning. He’s got a lot of life to live and we have to take care of him.”
Hayes had turned 4 on Aug. 6.
The family began the process of preparing for the transplant, meeting with psychologists, surgeons, financial counselors and a whole group of support personnel.
More than 40 live donors stepped forward to offer their kidneys to Hayes.
The first two matching donor candidates had to withdraw. Then, on Nov. 14, the phone rang at 7:18 a.m. It was the donor coordinator saying there was a 50/50 chance today was the day.
The family headed to Chapel Hill, arriving at 11 a.m.. At 2 p.m., the surgery was a go. Shortly thereafter, the organ had arrived.
Hayes’ surgery took four and a half hours. As promised, the surgeons called the family every hour to give updates.
“We are about to break down because of what’s going on and they are like, ‘This is just another day at the office,’” Jeff Boykin said of the doctors at UNC Hospitals’ pediatric nephrology division.
Medical personnel told the Boykins that Hayes’ surgery had been a success.
“They saved his life,” Jeff Boykin said.“For the first time in a while, I felt good about things. We’ve turned the corner.”
The Boykins said there aren’t words for all the support they have received from friends, family, employers, even people they don’t know.
“We’ve cried buckets of tears,” Jeff Boykin said. “We never gave up on him.”
“Since his transplant, he has literally done a 360,” Elisabeth Boykin said.
The Boykins don’t know who the donor is.
“I want everybody to know that somebody lost something to help our son,” Jeff Boykin said. “Both sides of our family support system, our friends and the friends we met along the way, the community, the city of Wilson, several divisions of the city have just been outstanding. People from out of state have sent care packages. The only thing we have asked for is prayers.”