Steien, Dana B.

Abstract Home parenteral nutrition (HPN) is a life‐sustaining therapy traditionally used as a bridge to enteral autonomy or intestinal transplantation. Increasingly, it is used for intractable feeding intolerance (IFI), which can occur near the end of life (EOL) in children with severe neurological impairment (SNI). In these cases, HPN use differs from its historical role and requires tailored outpatient planning. We report a retrospective case series of four children with SNI who developed IFI and received HPN as part of their EOL care. The pediatric palliative care team (PPCT) was involved in all cases during HPN decision‐making and planning. The pediatric nutrition support team (PNST) and PPCT collaborated to provide individualized, goal‐directed care. Patients ranged from 1 to 12 years old, with HPN durations between 5 weeks and 2 years. All were enrolled in hospice while receiving HPN. Plans were made through shared decision‐making, reflecting each family's values, and included tailored approaches to laboratory monitoring, febrile episodes, line care, growth assessment, and follow‐up. HPN at EOL requires careful ethical consideration, particularly of autonomy because families often find comfort in providing nutrition. IFI is often unanticipated, and prognoses are uncertain. With the combined expertise of PNST and PPCT, HPN can be used meaningfully at EOL, supporting family values, easing suffering, and creating space for peace and connection.

AbstractThe proper use of intravenous fluids has likely been responsible for saving more lives than any other group of substances. Proper use includes prescribing an appropriate electrolyte and carbohydrate solution, at a calculated rate or volume, for the right child, at the right time. Forming intravenous fluid plans for hospitalized children requires an understanding of water and electrolyte physiology in healthy children and how different pathology deviates from the norm. This review highlights fluid management in several disease types, including liver disease, diabetic ketoacidosis, syndrome of inappropriate antidiuretic hormone, diabetes insipidus, kidney disease, and intestinal failure as well as in those with nonphysiologic fluid losses. For each disease, the review discusses specific considerations, evaluations, and management strategies to consider when customizing intravenous fluid plans. Ultimately, all hospitalized children should receive an individualized fluid plan with recurrent evaluations and fluid modifications to provide optimal care.