Sarah Murnaghan's mom: 'Baby step in right direction'

PHILADELPHIA - June 17, 2013

About mid-afternoon, Janet Murnaghan, of Newtown Square, was sounding upbeat in her latest Facebook posting.

"Looking forward to the blessed day when I hear her little voice again," she said. And she went on, "Although wondering if her first words will be stop kissing me, because I pretty much do it non-stop."

Late this morning, Murnaghan indicated it had been a good night for Sarah, who remains in the intensive care unit at Children's Hospital of Philadelphia.

That echoed a post made about 10 hours earlier in which Janet said that Sarah was able to "back off some of her vent settings in terms of her O2 [oxygen] requirements."

Janet continued, saying "Sarah's x-rays improved a little today too. She is still fully sedated and critical."

Family members said last week they would not be doing media interviews while Sarah recovers, but Janet Murnaghan said she would post updates to her Facebook page.

Sarah Murnaghan, who was suffering from cystic fibrosis, is recovering after receiving adult lungs at Children's Hospital of Philadelphia. Her parents had sued over national transplant rules that place children behind adolescents and adults on the list for adult lungs.

U.S. District Judge Michael Baylson intervened, ordering that Sarah be put on the adult list, where the urgency of her case led to a match days later.

Also last week, the national transplant network created a special appeals process for about 30 other children who need lungs, while declining to automatically put them on the adult waiting list.

Baylson had ordered that both Sarah and another boy, 11-year-old Javier Acosta of New York City, be added to that list, and federal officials agreed to do so. The judge therefore canceled a hearing that had been set for Friday, but he said he'll revisit the issue next month if necessary, for either Sarah or Javier.

Cystic fibrosis causes sticky mucus to build up in the lungs, leading to life-threatening infections and other problems. Lung transplants aren't a cure but can buy time. The typical life expectancy for cystic fibrosis patients is now about 37 years and growing, thanks to medical advances.

Sarah's family said she was in a coma before the transplant and had perhaps only a week to live. She had been hospitalized for more than three months.

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