The girl who had the lung transplant after her parents appealed to HSS and UNOS to change the rules (and which did eventually grant an exemption) has had a setback though doctors are optimistic for a long term recovery.

Sarah Murnaghan, the Philadelphia girl who underwent a lung transplant this month after a court battle, struggled after a breathing tube was removed Wednesday, so doctors “sedated and re-intubated” the girl, her mother said through a family representative.

“It’s been an excruciating day. We extubated Sarah and her body could not handle the reduced support,” Janet Ruddock Murnaghan said in a statement issued by a representative. “It was impossibly painful watching her struggle to breath and panic.

“I have cried quite a bit, I just wish everything wasn’t so ridiculously hard for her,” the mother said.

Doctors have assured the family “that this does not change her long-term outcome but just means she needs more time to regain her strength,” the mother said. “One day Sarah will take that first glorious breath and we will celebrate!”

The 10-year-old girl remains on a ventilator and has been unable to talk, but she can nod and shake her head in response to questions, said Tracy Simon, a family spokeswoman, this week.

Before her transplant surgery, Sarah, who suffers from cystic fibrosis, was put in a medically induced coma to allow her body to rest.

It’s heartbreaking for her family, which has done everything possible to get her on the transplant list, and this setback may hopefully be temporary.

But it again highlights the risks of transplants, and just how few people get them because of a lack of donors and that technology hasn’t reached a point where we can either cure CF or create artificial organs like lungs.