Luke's Struggles With Acidemia

Luke was born on Wednesday and they were sent home. Within hours of having him home, they became concerned with his lack of interest in eating, irregular breathing patterns and overall lack of response to stimulation. On Saturday, they took him to the walk-in to see a pediatrician who immediately arranged for an ambulance to take him to the hospital in Madison. Almost simultaneously, his newborn screen came back indicating that he had some type of metabolic disorder. Things were happening extremely fast. Before transferring him to the American Family Children’s Hospital (AFCH), Luke was baptized and many prayers were shared. Upon arrival, Luke was put on dialysis and many intrusive lines were placed. His ammonia level was abnormal, had uncontrolled hypotension, seizures, respiratory hypertension…it was overwhelming to say the least.

"He was struggling so hard to breathe, his ribcage was visible with each breath,” Janet recalls. “You would pick him up and his arms would just flop, and he wasn’t opening his eyes. It was very scary.” They were especially troubled when their local physicians seemed puzzled, as well. They took him to their pediatrician, who found his temperature was critically low and he had lost a pound and a half since birth.

Since the transplant, the fog has been lifted and he has not stopped taking in the world around him. He is much more active since the transplant as well. Physically, he is running, going up and down stairs independently jumping and even starting to dabble on a tricycle! As expected, his speech development took a bit more time and patience. After eating became more natural for him and he was starting to use those muscles, he began to explore his voice. Now, Luke aimed to become a singer on big stage.