April 2019

Pediatrics

Parenteral nutrition

Helping youth thrive at home

n many ways, Amanda is a typical teenager. She loves shopping, practices yoga, and hangs out with her boyfriend on the weekends. If you saw her, you might not realize that Amanda is able to live a more-normal teenage life thanks to a therapy called parenteral nutrition (PN), which can be administered in homes, hospitals, and long-term care facilities. Unlike enteral feeding, which employs a gastrostomy tube (G-tube), PN is a method of feeding intravenously, bypassing the normal process of eating and digesting. It’s essentially a shortcut that gets nutrients directly to the bloodstream.

Amanda has short bowel syndrome (SBS), which results in less surface area in the small bowel and contributes to malabsorption, malnutrition, and electrolyte disturbances.

Along with SBS, Amanda has other metabolic demands that require her to receive 4,000 calories per day, approximately twice that of many girls her age, due to her body’s inability to absorb adequate nutrition. In addition to PN administered at home (HPN) or during daily activities outside the home, Amanda supplements oral intake with enteral feedings through a G-tube to help her meet her daily calorie and nutrient requirements—and to lead a full teenage life.

Advances in enteral and parenteral nutrition

Advances in enteral and parenteral nutrition have made these therapies more adaptable for outpatients. Thanks to the developments made in the portability of food and intravenous pumps, patients wear just a small backpack to receive their feedings or PN while they are at school, at home, or in the car.

Enteral and parenteral nutrition formulas have improved to meet specific nutrition needs of patients. One example of this is a new lipid source that is fish-based, rather than soy-based, and ameliorates liver toxicity—one of the adverse events of PN.

Careful monitoring and assessment of PN from a team-focused home care provider—based on the recommendations of a physician—is an essential piece of success when working with this population and leads to improved outcomes for patients with intestinal disorders requiring nutrition support.

Use and administration of parenteral nutrition

There are children who receive all their nutrition through home parenteral nutrition (HPN) and others, like Amanda, who use PN intermittently to supplement oral intake or enteral feedings and help regulate electrolytes altered by malabsorption.

There are other conditions where HPN may benefit outpatients, such as bowel obstructions, Crohn’s disease, post-operative patients, and some malignancies. A provider evaluates patients with intestinal disorders and, based on their nutrition deficiencies, current nutrition status, and prognosis, may decide to initiate PN.

Patients can receive parenteral nutrition in the comfort of their own home.

Addressing the nutritional needs of growing children is imperative for organ development, growth, and energy demands and is one of the reasons children often receive HPN. This intravenous therapy may be comprised of carbohydrates, electrolytes, minerals, proteins, fats, and vitamins. For younger children and infants, inadequate nutrition may keep them from achieving developmental milestones, such as rolling over and walking.

For the administration of HPN, patients with short-term nutritional needs may use a peripheral intravenous line, depending on the recommendation of the attending physician. Patients who have long-term requirements are best served with access through a central venous line. Parents and families are instructed in implementing HPN for the child, which includes care of the entrance site, programming the pump, and connecting the PN bag.

The benefits of home care

Patients can receive parenteral nutrition in the comfort of their own home from an infusion company that coordinates a care plan with their physician and helps monitor patient health. Pediatric Home Service (PHS) specializes in children with medical complexities and provides specialty enteral formulas, tailored PN, lab draws, and nutrition recommendations by PHS’ registered dietitians working with physicians.

The services PHS provides allow these children to thrive at home, in their communities, and participate in day-to-day activities while minimizing exposure to hospital-acquired infections.

HPN requires a team approach

While the physician leads the implementation of nutritional care starting with the initial order for HPN through PHS, successful patient outcomes require communication and coordination with the team. The nutrition support team (NST) at PHS includes infusion nurses, registered dietitians, pharmacists, and referring physicians.

When the patient comes on service:

  • Infusion nurses teach the family and child, depending on their age, how to set up and manage the IV and prepare PN for infusion. Older children may be more willing to comply with instructions when empowered to manage their own health care.
  • On a weekly basis, a nurse visits the home to record weight, perform lab draws, and review dietary logs including oral, enteral, and parenteral intake. The results of lab testing may impact future compounding of PN.
  • A dietitian works closely with the NST to analyze data gathered during the weekly visit and share that information with nurses, patient family members, and the physician.
  • If a patient receives HPN from the PHS pharmacy but lives outside the service area of infusion nursing, regional nursing agencies coordinate lab draws that are sent to PHS for review by the NST. Regardless of location, nearly all patients receiving HPN are followed by a PHS dietitian, who will connect with the family on a weekly basis or as frequently as needed.
  • Weekly NST meetings allow for the collaborative review of each patient’s labs and data. Team members make recommendations for changing the nutrition plan. Any proposed recommendations are always reviewed with the patient’s physician for approval.
  • A PHS pharmacist works with the PHS    dietitian to ensure that the PN recipe is safe and appropriate and communicates with the patient’s physician to determine further recommendations for preparing the PN and monitoring its delivery.

Frequent assessments of patient data help to prevent adverse effects.

The partnership between physicians and members of the nutrition support team is collaborative, with open communication by phone or email to ensure the best outcomes for patients. The frequent assessments of patient data help to prevent adverse effects and increase the potential for patients to progress off of PN.

Adjusting to life with parenteral nutrition

PHS wants to minimize disruption of a family’s and child’s life and the goal is to help patients and their families integrate into a normal routine despite being HPN-dependent. Consequently, the infusion is often delivered at night, which frees up a child for daytime activities.

When HPN is administered during the day, the infusion pump can be transported in a small backpack, allowing kids to stay active while they are receiving an infusion. Children receiving HPN will likely need to avoid contact sports and water sports, but can engage in most of the activities of their age-matched peers, although they may fatigue more easily.

For older children and teenagers, body image is important. Joining a support group where they can share their experiences with other HPN children and adolescents may be beneficial.

One of the risks involving central lines is acquiring a central line-associated bloodstream infection (CLABSI). Families are instructed to watch for signs of systemic or local infection and infusion nurses check the catheter site each time they visit the home.

Other potential complications for patients receiving HPN include dehydration, liver failure, blood clots, electrolyte imbalances, central catheter occlusion, and micronutrient deficiencies. Infants and younger children with developing organs may be more at risk for liver disease and damage from HPN.

Growing and thriving at home

For children unable to get adequate enteral nutrition through other means, HPN is critical to promote growth and thrive at home. Part of growing up healthy is time with family and friends, and providing this important service at home allows children to remain active in their communities.

Lisa Tollefson, PharmD, is a clinical pharmacist at Pediatric Home Service. She graduated with her Doctor of Pharmacy from the University of Minnesota School of Pharmacy. Post-graduation, Lisa worked at Children’s Hospitals and Clinics of Minnesota–Minneapolis campus for 12 years prior to working in home care with Pediatric Home Service since 2014.

Sarah Keyes, RN, BSN, is an infusion nurse at Pediatric Home Service. After graduating from North Hennepin Community College in 2013 with her AS in nursing, Sarah started working with Pediatric Home Service as a home care nurse and then went on to complete her BS degree at Bemidji State University. In February 2015 she joined PHS’s Infusion Department.

Maria Mahady, RD, LD, is the registered dietitian supervisor at Pediatric Home Service. She graduated with a BS in nutrition from the University of Minnesota–Twin Cities and completed her dietetic internship at University of Minnesota Health. Following the internship, Maria worked at the University of Minnesota Medical Center for three years. She has been working in home care with Pediatric Home Service since 2012. 

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Maria Mahady, RD, LD, is the registered dietitian supervisor at Pediatric Home Service. She graduated with a BS in nutrition from the University of Minnesota–Twin Cities and completed her dietetic internship at University of Minnesota Health. Following the internship, Maria worked at the University of Minnesota Medical Center for three years. She has been working in home care with Pediatric Home Service since 2012.