An 8-month-old child with congenital myotonic dystrophy has been hospitalized with a severe respiratory infection. Which action by the nurse is the most appropriate?
A.
Determine if the family wants aggressive ventilatory support.
B.
Discuss the option of lung transplantation with the family.
C.
Hold a family meeting to discuss palliative care measures and code status.
D.
Inform the family the child will be ventilator dependent as she gets older.
ANS: C
Congenital myotonic dystrophy usually causes death before the age of 1 year due to the inability to maintain respirations. In this situation, the nurse should have a meeting with the family to explore a broad range of therapeutic options, including palliative care measures and code status. Just inquiring about ventilatory support is too narrow a focus. Lung transplantation is not a treatment for this disorder. Children with this disease die at a young age, and so they do not grow up dependent on ventilators.
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