Can pediatric Dialysis be fun?

[lpruteanu]

As a dialysis nurse working in different areas of the hospital and also in freestanding chronic dialysis clinics, I had the opportunity to enhance my knowledge and experience in acute , sub-acute and chronic settings. Traveling from hospital to hospital, dialyzing patients in surgical ICU, cardiac units, neuro ICU, trauma ICU, transplant unit, I was exposed to a variety of patients and diagnoses, different age groups, economical status, culture and different level of education.

Over the years, I learned how to respond to patient needs by modifying and adapting my patient education methods to their level of understanding, by helping them find coping mechanisms, accept their diagnostic, and rearrange their life style to incorporate dialysis treatment and still maintain a desirable quality of life.

As hard as it is for adults to accept the challenging diagnostic of kidney failure, with all the diet and fluid restrictions, physical limitations, and changes in family dynamics, it is yet more difficult when the patients are children.

How can one answer questions such as ‘Why me?' ‘Why now?' ‘Why do I have to do this?' ‘What are my friends going to think about me?' ‘Will I have to miss school or fun, time with my friends?' What does one answers to statements such as ‘I am tired,' ‘I am scared,' ‘I can't do it any more, Please help me!'?

In the beginning, working in pediatric dialysis felt as if I was embarking on a new career. Along with learning to understand and implement the treatment orders and administer new medications, I needed to learn to teach pediatric patients of different ages about kidney failure, treatment, diet, fluids , medications, labs, access, the dialysis machine, and everything pertinent to dialysis.

Every day, I was challenged to find valid answers to my patients questions, to find solutions to every problem they encountered, to explain procedures and to find ways for my patients to benefit the most from the time spent in dialysis. The parents were concerned not only about their children's health, but also about the psychological impact of dialysis on their lives. The main question was how to make children feel better not only physically, by providing very good treatment and care, but also emotionally. What could the hospital and the dialysis team do to decrease the stress and fear of being treated in the hospital and help the children to feel comfortable, welcome, and happy?

Our new children's hospital embraced the theme Power of Play” and is specially designed as a child-friendly setting. For every child that enters our hospital, the first impression is very important. The friendly, welcoming approach to the family and child and the colorful units with different themes including Sports, Arts and Games help the children to overcome the fear of hospitals and doctors. Every new dialysis patient has a meeting with one of our nephrologists and with a nurse practitioner. After a visit to the physician's office, the patient is taken on a tour of the dialysis unit by the social worker. The friendly look of our unit with colorful walls and curtains, big windows, toys and games, helps create the feeling of a homey environment. In addition to our play-room full of toys, the big screen TV, with all children channels, the varieties of movies and games, the Wii, the XBox, books and toys, help decrease anxiety in our patients.

Our hospital Clown, the Child-life team, the psychologist, the social worker, our friendly volunteers, the therapy dogs and therapy pony, all together have a very important and active role in our pediatric patients treatment and life. The young patients have the opportunity to hear stories they like, read by our volunteers, or play games, learn songs, or play with the therapy dogs. Every team member is involved in activities designed to provide a friendly environment according to the children's ages and preferences: coloring books, painting, piano or harmonica lessons, arts and crafts, Lego, etc. In addition, child specialists conduct group activities such as Monopole, Uno, or Bingo, where the winner is rewarded with a gift. Patients also enjoy ceiling tile painting, and our unit has became an art exhibit, expressing the sad or the happy moments in the patients' lives.

The patients have an opportunity to learn more about dialysis by participating in a six-week unit competition initiated by the staff or patients in an effort to improve compliance with medication, diet and fluid restriction. All winners are given a gift at the end of the session and are nominated as ‘The Hero of the month.' The most frequently used challenges are Best K level, Best Phosphorus level, Best blood pressure, and Best intradialytic weight gained.

Celebrating holidays together as a group helps the patients to connect to each others, to make friends, and to build up trust. Patients are happy to be part of Thanksgiving lunch, to celebrate Valentine's day, Doctors and Nurses' day, birthdays, back to school parties, Halloween costume party, Kidney Week, and 4th of July over renal-diet friendly food and cupcakes. Our highly motivated Child-life specialists involve and encourage patients and their families in weekly activities such as Purple Friday, Funny hat day, Weird wig day, Pajamas, day, Mismatch socks day, or A day for yourself ( manicure and massage), The most decorated shoe, as well as Bake Sale for dialysis found raising. The whole team participates in Kidney Walk, where everybody wears a specially designed Hello Kidney! designed by one of our patients.

One of the most liked and appreciated bi-monthly activities is the Dialysis patients, meetings ‘What happens in dialysis, stays in dialysis,' when the patients can have lunch together with the child-life specialist and the psychologist to openly discuss concerns, to share their experiences, and to address their expectations in order to improve compliance and help each other to live with dialysis.

One of the most loved and fun activities is ‘Get a Cooking lesson Class' directed by a professional cook from the Culinary Art School and our registered dietician, where the patients are able to learn how to cook a meal following the renal diet guidelines but at the same time enjoying a tasty dish.

Our voluntary team brings in a music student to offer short piano lessons to the patients interested in music. The talented dialysis patients have an opportunity to participate in the Annual Calendar Painting program where they could be engaged in a contest to have their art printed in a calendar.

Lotsy Dotsy, our special hospital clown spends time with our patients, sharing her experience and telling them encouraging stories and bringing special gifts from Disney world: special socks, special Disney hats, designed blankets, tickets for movies, games, and Christmas pageant .

A special night of fun with dinner and games at Dave and Buster, bonds all of us together with patients staff and families.

One of our patients' special ways to give thanks to their health care providers is the ‘Thank you' cards, created by patients for the food service, nurses, doctors, and pharmacist , where everybody writes a note to their most liked staff members.

When it is time to move on and leave the unit either for transition to an adult unit or to receive a transplant, our patients receive gifts and greeting cards, a Scrap book made with love by our staff to remind them of the happy moments experienced in dialysis and their friends and caregivers.

All of these activities keep the dialysis patients active, help them to look forward to the next fun day, encourage them to participate and be involved in finding new ways to cope and to decrease anxiety and fear, keep them informed and involved in their own care, include them in the dialysis treatment plan as the most important member of the team. Their active participation in their own care gives them more freedom and control over their lives. Improving their knowledge and understanding of the disease help to improve their quality of life and prepare them for transplant and the transition to life after dialysis.