THE TECHNOLOGY-DEPENDENT CHILD

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Advances in technology allow survival to hospital discharge of patients who in the past would have died or been institutionalized indefinitely. The end result of technologic adaptations to the care of infants and children is an expanding population of technology-dependent pediatric patients. In turn, the primary care and coordination of subspecialty intervention for these children is largely the responsibility of the general pediatrician—efforts that invariably consume a disproportionate share of physician and staff time. Thus, working knowledge of issues pertaining to the care of technology-dependent children are important for all pediatric practitioners.

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THE POPULATION

In 1987, the US Office of Technology Assistance defined technology-dependent child as “one who needs both a medical device to compensate for the loss of a vital body function and substantial and ongoing nursing care to avert death or further disability.”62 In an effort to clarify the population considered technology dependent, the US Office of Technology Assistance defined four groups and estimated the number of children in each group at that time. Group I, ventilator-dependent children, was

OXYGEN

Supplemental oxygen is used for children with chronic lung disease, such as bronchopulmonary dysplasia, with or without the need for mechanical ventilation. Space, mobility, expense, and needed concentration are the primary considerations when choosing an oxygen source. Home oxygen is supplied in three forms: liquid oxygen, oxygen cylinders, and oxygen concentrators.

Liquid oxygen has several advantages. Liquid oxygen tanks are light and portable. They have a longer duration of use than oxygen

TRACHEOSTOMY

Children with tracheostomies are an important subpopulation of technology-dependent children. Upper airway obstruction is the commonest reason for tracheostomy in children.5, 7, 17, 59 Other problems requiring tracheostomy include long-term mechanical ventilation and inability to protect the airway, as in children with neurologic impairment or neuromuscular disease. Tracheostomy generally is performed by an otolaryngologist or general pediatric surgeon. After the procedure, inpatient monitoring

MECHANICAL VENTILATION

Long-term mechanical ventilation at home has evolved tremendously from the negative pressure with iron lungs used in polio victims of the 1940s.26 Multiple home ventilatory options are available to children with chronic respiratory failure. Negative pressure still is used in certain patients using a cuirass, and diaphragmatic pacing can be successful for patients with respiratory failure of neurologic origin.65 Most children receive some type of positive pressure ventilation, however. Options

ACCESS PROBLEMS WITH ENTERAL NUTRITION

Perhaps no technology has supported the survival of more chronically ill children than advances in the provision of enteral nutrition. Enteral nutrition is the nonvolitional delivery of nutrients by a tube to the gastrointestinal (GI) tract. Chronically ill children, such as those with neurologic impairment, cancer, HIV infection, cystic fibrosis, or receiving long-term mechanical ventilation, often cannot achieve appropriate nutrition for maintenance and growth by oral intake.35 Most of these

FORMULA PROBLEMS WITH ENTERAL FEEDS

The PEG tube is generally ready for use 4 to 24 hours after placement. The formula and mode of feeding prescribed must be individualized to the child's underlying condition, and consultation with an expert in pediatric nutrition is often desirable. Given many available options, choice of the most appropriate formula can be confusing. This decision depends largely on the initial nutritional assessment and factors such as age, GI function, and history of feeding tolerance. Fluid, energy, protein,

PARENTERAL NUTRITION

Parenteral nutrition is the delivery of amino acids, high concentration dextrose, lipids, minerals, electrolytes, and vitamins by intravenous (IV) access. Children with severe short gut syndrome, inflammatory bowel disease, intractable diarrhea, or other GI disease may be unable to tolerate adequate enteral nutrition.22 These children require partial or total parenteral nutritional support.

Chronic parenteral nutrition must be delivered by semipermanent intravenous access. These catheters are

DIALYSIS

Normally functioning kidneys tightly regulate extracellular fluid volume and solute. In persons with severe renal impairment, dialysis removes excess solute and fluid and prevents uremic symptoms, such as pericarditis and bleeding. In combination with appropriate nutrition and medication, 24-month survival rate for children receiving chronic dialysis is more than 90%.63 Approximately 1000 new patients with end-stage renal disease less than age 20 years are reported to the United States Renal

FAMILY CONSIDERATIONS

Advancing technology has allowed and encouraged the care of children in the home who in the past would have been cared for in hospital ICUs. The goals of home care are increased independence of the patient and family and reduced health care costs. These advancements have brought new stress, however. Changes in the physical structure of the home, changes in the family budget, and new roles and interactions add stress to families, many of whom believe that this aspect of care is not appreciated

SUMMARY

Improvements in the provision of oxygen, mechanical ventilation, tracheostomy care, enteral and parenteral nutrition, and dialysis have expanded the population of technology-dependent children. This article attempts to review pertinent points regarding these services, including common complications. Primary care and subspecialty physicians must smooth the transition of these children to the home environment, but a comprehensive team approach is necessary for the recognition of medical

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