On Saturday, May 6, 2017, my son passed away from rejection of his transplanted lungs. This was a long-term complication resulting from Langerhans Cell Histiocytosis.
The beginning of our story with Langerhans Cell Histiocytosis took place back in 2004. A New Journey has begun. We learned on March 3, 2017, that Sean is rejecting his transplanted lungs. March 6 we began the process of trying to get that under control.
New pic added on 2/2/11!My Story is background, Journal is what's happening now. Visit the Links, Photos, and sign the guestbook so we know you were here. (Cookies.)Sean was initially born 15 weeks (3.5 months) early in 1998. Because of his extreme prematurity, his lungs weren't fully developed. He spent 81 days in NICU and a year on oxygen at home, enduring several bouts of pneumonia in the first 3 - 4 years.Sean's next few years went by okay. Had his share of colds. They generally lasted longer than in other kids, but otherwise we thought he was doing well.September, 2004, came along, however, and things changed for us. Sean had his first spontaneous pneumothorax (collapsed right lung for no reason). They put in a chest tube and we were in the hospital for 4 days. And thought we were done and all was now okay.October, 2004, his right lung again collapsed. However, getting it to re-expand proved much harder this time, and surgery became necessary. An echocardiogram was done before hand to check the status of a pinhole sized hole that had been in Sean's heart between the two atrial chambers at birth (atrial septal defect, or ASD). It was now a 6X9mm hole (in a heart the size of his fist, the hole was the width of his middle finger). Sixteen days in the hospital this time.December, 2004, we go see the pediatric cardiologist to discuss how and when to repair this ASD. The doctor notices his thyroid is enlarged and sends us to the lab, calling the next day to inform us Sean has hypothyroidism, also.January, 2005, we visit the endocrinologist and get Sean started on levothyroxine to start working on getting his thyroid levels regulated.May, 2005, a CT scan done shows Sean has cystic lung disease, which is the reason for his lungs collapsing. According to one of his doctors, he is a "walking pneumothorax waiting to happen".June, 2005, Sean's left lung spontaneously collapsed. Because it's a week before he's scheduled for his ASD repair in Minneapolis, the doctors opt to re-expand his lung with pure oxygen, and set us up for an appointment with a pediatric pulmonologist in the cities. His surgery happens on June 29, along with surgery on his left lung and a biopsy.August, 2005, we end up back in Minneapolis, where this website picks up.