You could easily walk past it and never know. Just off the second-floor elevator in All Children’s, tucked away from the usual bustle of the hospital, the quiet world of dialysis nurses, families and patients moves at its own deliberate – and often difficult – daily pace.
The team of four nurses and one office coordinator, guided by department supervisor Cheryl Shepherd, R.N., is a tight-knit group delivering care that is the lifeblood – literally and figuratively – to a population of children who receive dialysis three days a week, for hours on end.
Their home inside the hospital is a spacious, state-of-the-art facility equipped with video games, TVs and even beds to make the time pass more easily – and one of the few dialysis units in the state dedicated solely to pediatric care.
For many teens, the unit is a place they have come since early childhood. For youngsters, even babies, it is where they will spend countless time for years to come for hemodialysis on Mondays, Wednesdays and Fridays – cleaning their blood and doing the work that non-functioning or compromised kidneys no longer can. Many other patients receive dialysis at home (through “peritoneal dialysis”) but they also make regular clinic visits at the hospital.
For the dialysis nurses, meanwhile, it is a 24-7 commitment and a highly personalized form of patient care. They virtually become extensions of a family, developing close relationships with the children they see through the years – helping parents and kids deal with the enormous challenges faced by a life of dialysis or the meticulous care required after a kidney transplant.
“It’s rewarding but sad at times, too,” Shepherd says. “They really get to know the families and kids well. When the families have a question, they call the unit. We do have a nurse on call round-the-clock. They take all the patient calls – and the nurse will call the physician if there’s a problem. We have a significant number of patients on home dialysis. And if any of them are admitted, the nurses come in to assist. Or they trouble-shoot over the phone when there’s a problem with a dialysis machine at home.”
What makes the challenge even harder, both for patients and families and the nurses who care for them, is the often long-term nature of the condition.
“Most of the patients we have are chronic,” Shepherd explains. “They have kidney disease – they’re either born with it or developed it later. Some don’t have kidneys because they were removed; others have kidneys that stopped functioning. Chronic means they are never going to come off dialysis. With acute patients, there is a loss of kidney function that occurs suddenly, usually within a 48-hour period. Acute kidney injury can be reversible with treatment, but a proportion of patients will never regain full renal function, and enter end-stage renal failure requiring lifelong dialysis or a kidney transplant. Our nurses know every situation inside out – and have more than 100 years of experience between the four of them.”
Two of those nurses, Jane Petruccelli and Carolyn Defayette, have been in the dialysis unit the longest time, 20 and 15 years respectively. Peggy Bach has been there for five years, and Kim Suarez has been for four. All of them have experience either in the PICU or CVICU.
“I think the hardest part of the job is getting patients to understand how important adherence is and how damaging some of the non-adherence is to them,” says Petruccelli. “Because you don’t feel bone disease. You don’t feel hypertension. But those things can happen if you don’t stick with the plan. Kids don’t know mortality or consequences. That’s one of the hard parts of our job.”
The nurses talk about a hemodialysis patient who eventually received a long-awaited transplant. But because the teen didn’t stick with the critical regimen of medications and shots for transplant patients, new health issues took hold and landed the youngster back on dialysis.
“We get their labs every month, so it’s a good indication of how they’re doing and how their adherence is,” adds Bach. “And we do this little incentive game, where whoever gets the most improvement gets a prize. I don’t think the kids love it here but they have a pretty good attitude all things considered.”
Adds Defayette: “It becomes tough during their teenage years. Like every other teenager on the planet, they feel like nothing is ever going to happen to them. So a lot of them are under the belief that after a transplant their kidney starts to ‘like’ them – that they don’t need the drugs. It’s very challenging.”
The challenge also applies to children currently undergoing dialysis: making them understand how they need to take their medications to protect their bones and why they need to adhere to a special diet.
“The medications don’t always taste good,” Suarez says. “The kids coming in for dialysis often think that we’re ‘fixing’ them and then they’re on their way. But the diet is crucial and very difficult to follow for anyone – especially for ones on dialysis. No pizza, no French fries, no potatoes, no cheese. Salt increases the fluid in your body, which they already hold onto. Their kidneys don’t work so it limits their salt intake. In addition, phosphorous – in dairy products such as milk and cheese – will actually deteriorate their bones over time.”
Yet with all the hardships faced by patients and families, there is a deep sense of appreciation for the work the dialysis team does and a powerful bonding that takes place. As always, patients are greeted by the dialysis office coordinator, Debbie Thackrey, upon arrival for dialysis treatments or clinic visits. She is a popular fixture who maintains much of the “behind the scenes” activity that is required for the nurses to provide care.
Patients tend to develop “favorite” nurses and rely on them for encouragement and friendship – with an additional layer of support from the Child Life staff member dedicated to the dialysis unit, Holly Ott.
One dialysis patient and his family members have been driving four hours roundtrip three times a week to All Children’s from Orlando. The long trip is worth it, says mother Christina Hudson, because of the wonderful care and top-notch facility at All Children’s. Her 18-year-old son, Donovan, is also a heart transplant patient followed by Dr. Alfred Asante-Korang and the ACH Heart Transplant Program.
“The main reason is for Donovan to be happy and comfortable, and that’s what he is here,” Hudson says. “We were going to switch back to a facility in Orlando, but this is where he’s happy. No matter what we need, there’s always somebody to help. And Child Life helps so much, even with Donovan’s little sister.”
In Donovan’s case, medications needed for his transplant caused his kidneys to fail – a scenario that’s not uncommon. In three years, he will “graduate” out of All Children’s, but for now, this is where he wants to be for his care.
“Throughout the state, there are lots of free-standing dialysis centers but very few that perform pediatric dialysis,” Shepherd says. “Many of these facilities are only for adults and won’t treat children under 15 in most cases. So I think the fact that All Children’s is a pediatric facility, and we provide not just an acute service but an ongoing chronic service, makes a big difference. And the experience and care we offer is first rate.”
“The nurses who work here are an incredibly special breed,” adds Sharon Perlman, M.D., of the USF Morsani College of Medicine nephrology program at All Children's. “Because many of them have come from intensive care backgrounds, they’re used to a high-intensity, high-acuity environment with a lot of rushing around.”
“The environment here is a combination of ICU and long-term care,” Dr. Perlman continues. “In a larger sense, they are almost like surrogate mothers to the kids. These are patients we see sometimes just for months, and sometimes for many years. In addition, the technology here is impressive and they are extremely adept at managing it.”
For instance, the nurses are in charge of maintaining the unit’s large water system so that purified water – vital in the dialysis process – is always available. It’s critical that the machines are always in top shape. They filter the blood, clean it and send it flowing back into the young patients. “It’s constant motion,” Shepherd says.
And that sums up daily life, nestled out of sight, for the nurses of the dialysis unit.