TODAY | June 29, 2013
>>> who underwent a double lung transplant .
>> as kate snow reports, the court battle was the beginning of a difficult fight for her life.
>> reporter: 10-year-old sarah is still in the hospital this weekend with another surgery scheduled monday.
>> so many people have come out and loved my kid. it's been the most, you know, beautiful thing.
>> reporter: earlier this month her parents fought a court battle to move her off a waiting list for the lungs she needed and allowed her to get a set of adult lungs. on june 12th , everything had gone well. friday, we learned about a major setback. the first set of lungs failed.
>> they called a code blue in her room. we ran down the hallway and found out that her lungs, for whatever reason were going into a rapid decline.
>> reporter: that night, the protocol for any recipient, she was put back on the donor list. three days later, she received a second pair of lungs. it's not that uncommon. what's different is she got on the adult donor list in the first place.
>> we should not make a special rule for individuals who have the ability to get their case into the public eye. we are seeing today once we commit that, it's not always over with the first transplant.
>> reporter: her family says they waited until now to tell the story because it was too hard to tell the story when they thought they might lose her child.
>> it's up and down. she is in a better place .
>> reporter: she's awake and communicating now. it's still a hard road ahead. for "today," kate snowe, nbc news, new york.