Callie’s oxygen saturation level started falling right after she went to bed Monday night. Within a few minutes it was clear that she was in distress and there was nothing we could do to help her. We called her pediatrician and then rushed Callie to our local emergency room, which is only a few blocks away.
When we arrived Callie’s pediatrician had already contacted the hospital staff with instructions for her immediate care and to make sure she was transferred to Duke University Medical Center, whose staff is much more familiar with the fragility of children with SMA.
Callie arrived at Duke via helicopter at about 3 a.m. Tuesday. She is still in the pediatric intensive care unit right now, but her condition has stabilized. She is undergoing aggressive respiratory therapy on a regular schedule. Chances are she has only a cold or another kind of common upper-respiratory virus, and although we were able to keep her in pretty good shape at home for five days, by Monday night she was apparently too tired to maintain her blood-oxygen level, even with our help.
We’re grateful for Callie’s pediatrician, Dr. James Anderson, who guided us and advocated for Callie late Monday night and Tuesday morning. We’re also grateful to Sandy Franks for spending the night with our boys and taking care of them Tuesday, all on very short notice.
We’re hoping Callie will not have to stay in the hospital beyond this weekend. But when we get home things will be different. It seems that a bipap machine will play a much larger role in Callie’s care. Callie had a good experience with bipap during her long hospitalization this past winter, but we have rarely used it at home and never while she’s awake. It’s also possible Callie will need professional nursing care at home.
We’re taking things day by day and, as usual, trying not to think so much about the future. Rather than focusing on what she’s losing we’re thinking about what she has: a charming personality, a desire to enjoy life, a purpose to fulfill and a family with a tremendous support network to help her.