Project Description

Christian’s Story

Christian is a beautiful 5 and a half year old child who on December 29, 2009, at two months old, had his first seizure. He was rushed to the hospital and the doctors felt that it may have been due to a slight body temperature. He has since been hospitalized approximately 30 times for complications related to his seizure disorder. Christian has suffered from a seizure disorder of unknown etiology since 12/2009 and exhibits focal seizures, grand mal/tonic-clonic seizures and absence/petit mal seizures. Christian has a mutation of SCN1A, diagnosed in 2011. Due to the nature of these seizures, it is impossible to predict when they will occur. Christian has had 11 episodes of respiratory arrest or his saturations put him in danger of respiratory/cardiac arrest and required intubation and ventilator support. Christian was also diagnosed with Cerebral Palsy.

In April 2012, he had a tree-hour long seizure, was hospitalized and required prolonged intubation that led to a tracheostomy tube placement and the need for gastrostomy tube feedings as client can no longer swallow on his own. He lost all his brain functions and is now bed ridden. During that hospitalization, Christian was diagnosed with human metopneumovirus, double ear infection, encephalopathy and seizure activity that left him unresponsive to his environment. His Depakote level and liver function tests were dangerously high. While hospitalized, Christian was diagnosed with RAD-reactive airway disease and requires standing order nebulizer treatments to keep his airway open and patent.

Due to his frequent hospitalizations, and his prolonged seizure in 2012, Christian is developmentally delayed to a 4-5 month old level. Christian is receiving physical therapy and special education and benefits from skilled nursing in his home to reinforce these therapies and to assist in achieving developmental goals. Christian has generalized weakness, hypertonicity and hyperactivity. His right side is weak normally but after he seizes, he is unable to utilize his right arm and leg for hours afterward.

Developmentally, his neurologist is still hopeful that he will regain some of the developmental milestones he has lost. Christian has become slightly more alert to his surroundings and is trying to turn over. He requires constant supervision to prevent injuries, decannulation and pulling of his GT and trach. His facial muscles have improved slightly but are still weak and his low muscle tone has resulted in increased drooling.

Christian lives with his mother Martine, his dad Wilfredo, 4 siblings and his grandmother. He started school this year and has had over 50 absences due to his seizure disorder.