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 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.
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:
Frequent assessments of patient data help to prevent adverse effects.
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.
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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.