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Children with medical complexity are growing in number in children’s hospitals. They are at the highest risk for medical errors1,2 and for readmission after discharge.3 A definition of the patient with medical complexity remains elusive, but these children are characterized by chronic, severe health conditions, substantial health service needs, functional limitations that are often severe, and high health resource utilization.4 Often these patients have abnormalities involving multiple organ systems and are dependent on medical technology such as gastrostomy tubes, tracheostomies, ventilators, and ventriculoperitoneal (VP) shunts. Many inpatients with well-defined chronic disease are cared for primarily by subspecialists without input from a general pediatric hospital provider. Typical patients in this group include those with cystic fibrosis, sickle cell disease, inflammatory bowel disease, or malignancy. Their care is better discussed elsewhere. However, many patients with complex chronic disease do not fit neatly into a subspecialty, and hospital-based pediatricians are often asked to care for them. Of this latter group, severe neurologic impairment is a frequent common denominator.5 This chapter focuses on the acute care of this type of child. The comorbidities of this population are the focus of Chapter 181.
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Once an irreversible brain injury has occurred, the etiology (Table 180-1) often matters little in management. Although these patients may be intimidating to the uninitiated, severe central nervous system dysfunction leads to a predictable set of problems (Figure 180-1). For instance, they are at risk for seizures, particularly during acute illness. Nonambulatory patients develop osteopenia and are susceptible to fractures, which can occur with normally benign interventions such as physical therapy. Renal calcifications and stones are common due to mobilization of minerals from bone. Often unrecognized is a predisposition to bladder dysfunction and urinary tract infections due to dyssynergia of the detrusor and external sphincter muscles. Swallowing problems are common and lead to poor nutrition as well as aspiration of gastric contents or oral secretions. This latter problem, as well as poor ventilatory dynamics, predispose to pneumonia. Decubitus ulcers are a common and often preventable problem. These are often found on bony prominences such as the coccyx, ischium, greater trochanter, heel, and occiput as well as on the ears if the patient lies on one side. They may also be seen at pressure points of splints and wheelchairs. The wise practitioner looks for these when performing a physical examination, especially on malnourished patients. Severely neurologically impaired patients experience intestinal motility problems - gastroesophageal reflux and constipation are extremely common. Central nervous system dysfunction can lead to behavior problems such as self-abuse or aggression. If the hypothalamic pituitary axis is damaged, patients may experience diabetes insipidus, adrenal insufficiency, or hypothyroidism. Hypothalamic dysfunction may cause problems with temperature regulation. Patients with profound impairment may experience autonomic dysfunction, which can occasionally lead to paroxysmal sympathetic hyperactivity, also known as autonomic storming, which is easily confused with ...