It was exciting, says Chris Kurian, RN, a staff nurse on the unit at the New York City hospital where the child received post-transplant care. This is my first experience taking care of a kid with five transplants.
The boy was born with total intestinal atresia, a rare malformation of the entire gastrointestinal tract. He could not eat and required nutrition by artificial means. Patients with this disorder usually present within days of life with an intestinal obstruction and bilious emesis.
He had a malformed intestine from the pylorus of the stomach down to his rectum, says Kara Ventura, DRNP, a nurse practitioner at Morgan Stanley who coordinated the childs care. These children require an intense amount of coordination for all of their nursing needs to be met, including at home.
A home care nurse in Essex County managed administration of the total parenteral nutrition and multiple IV medications and his ostomy care. That nurse spoke daily with Ventura while the boy waited four months for the organs to become available. Ventura or another provider adjusted his plan of care based on reports of intake, output, weight, and other changes in his condition.
Total parenteral nutrition eventually damaged the boys liver. The rare multiple transplant procedure offered the child, cognitively intact and with no other major health problems, the only hope for a normal life.
He was born in upstate New York, and the surgeon caring for him up there said he had no more to offer [the boy] and referred him for a transplant evaluation, Ventura recalls.
Morgan Stanley performs many single-organ transplants, but this was the first time its surgeons transplanted multiple visceral organs. Ventura says multiple-organ transplants like this one are very rare, with only a few having taken place nationally. Although it was challenging, it also was a venue in which nurses could learn more about organ donation, says Yvonne Guzman, RN, MSN, Patient Care director.
The boys new organs came from a single infant donor, as one unit, with connections intact. Due to swelling after the surgery, his abdomen remained open for several weeks, with a plastic mesh covering the area. Nurses performed wound and ostomy care. The child received antibiotics and drugs to protect against rejection.
Monitoring for signs of infection and respiratory status were important considerations, Guzman says. The boy remained in reverse isolation during his entire two-month, post-transplant stay, to protect him from infection. He developed cardiomyopathy, an undesired side effect of the immunosuppressive drugs. Limited heart function compromised his respiratory status.
There were respiratory issues during most of his time here [post-operatively], Kurian says. Kids with transplants need a lot of care. He was always on a cardiac monitor.
The boys care was similar to those of patients receiving a single organ, Guzman says. Nurses monitored ins and outs to ensure that he took in enough nutrition. He required total parenteral nutrition for about five days after arriving on the transplant floor. He then was transitioned to EleCare, a nutritionally complete elemental formula for infants and children.
He was tolerating medication by mouth and NG feeding [before he left], Kurian says.
Alert and oriented, with his parents a few hours away, the child required social support from the nurses. At one point, Ventura put him in a wagon and took him for a walk around the hospital and outside for some fresh air.
The child was discharged for rehabilitation to Blythedale Children’s Hospital in Valhalla, N.Y., but he soon returned to the hospital for more intense medical and nursing management. He is now ventilator-dependent in the ICU, due to the drug-related cardiac complications. The transplant team is trying to wean him to a Continuous Positive Airway Pressure Unit, so he can return to a rehabilitation facility.
z They also are working to decrease the amount of immunosuppressant drugs, which, hopefully, will allow his respiratory status to improve. Its a delicate balance, trying to determine the correct amount to prevent rejection, yet not too much to exacerbate his heart condition. He is a patient who requires nursing care at the staff level, intensive-care level, and advanced practice level, Ventura says. We will follow him until he is 18 years old.
Hes taking in nourishment and his bowels function normally. Eventually, doctors hope to close the ostomy, but for now it allows a less invasive way to perform scopes and biopsies. He has shown no signs of rejection. He craves attention and wants to play, and he cries when Ventura leaves the bedside.
Hes trached and awake, Ventura says. There are good days, when he is in bed playing and alert, and then there are really bad days. He has a long road ahead of him.