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6.26.13 Janet and Fran Murnaghan Provide Important New Information on their Daughter Sarah’s Treatment and Condition

6.26.13 Janet and Fran Murnaghan Provide Important New Information on their Daughter Sarah’s Treatment and Condition

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Published by Maureen Garrity
2nd lung tx 4 Sarah Murnaghan
2nd lung tx 4 Sarah Murnaghan

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Published by: Maureen Garrity on Jun 28, 2013
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05/14/2014

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 Janet and Fran Murnaghan Provide Important New Informationon their Daughter Sarah’s Treatment and Condition
 This week our family fully expected to celebrate the event we’ve beenwaiting 19 months for - our daughter Sarah’s first independent breathswith her new donor lungs.Her doctors continue to wean her from her ventilator, her last twochest tubes were removed today we are taking steps to prepare her forextubation again.We’re not out of the woods, but Sarah’s health is trending in the rightdirection and we wanted to provide more detailed information as towhat she has been going through.After we announced the overwhelmingly joyful news on June 12 thatSarah’s lung transplant was a success, things quickly spiraled out of control. Though we had made Sarah’s battle very public, we werecompletely emotionally unprepared for what was to come. That evening, as we waited for Sarah to be transitioned back to herroom, an emergency code blue was announced. Sarah’s vital signshad begun descending rapidly as her new lungs started to fail. Wewere devastated and could only pray as CHOP’s surgeons performedimmediate emergency surgery to transition Sarah to VA ECMO, abypass machine that took over the function of her heart and lungs. Thankfully, Sarah survived the transition to VA ECMO. The news was grim – Sarah had a complication called PrimaryGraft Failure (PGF), which occurs in 10 percent to 25 percent of lungtransplants, resulting in the death of half of all patients affected by it.Further analysis of the first set of donated lungs revealed that thecause of the PGF was due to the quality of the donated lungs. Only80% of donated lungs are transplanted, as lungs are often in poorcondition after the donor's death. In Sarah's case, the donated lungswere known to be in less than optimal condition, but Sarah was out of time to wait.Doctors told us Sarah was unlikely to survive more than a week on VAECMO given her condition and that her only hope for survival was asecond lung transplant. With an LAS score of 87, her surgeons listedSarah for transplant again that very night, and the next day OPTNapproved Sarah to be listed for adult lungs based on their new case-by-case review procedure.It was agonizing watching Sarah kept alive on VA ECMO, and herdoctors prepared us for the probability that Sarah would die, eitherbefore a second surgery could take place or on the operating table.
 
 Three days later, on June 15, we learned that new lungs were availablefor Sarah. We were warned, though, that the lungs were high-riskbecause they were infected with pneumonia. They were Sarah’s bestand only hope.By 1 pm that same day, Sarah was wheeled in for her secondtransplant, performed by the same surgeon who did her firsttransplant, Dr. Thomas Spray. The second transplant operation wastruly a success – she made it through the surgery and no longerneeded to be on VA ECMO, but her little body was very traumatized byall she had been through.Each day since then, her lungs have improved on x-ray and havecontinued to work better and better. As the days have gone by, shehas needed less and less support from the ventilator. On June 21,seven days after the second transplant, Sarah underwent yet anothersurgery to close up her chest which her doctors had allowed to remainopen so she could heal. Sarah was slowly brought out of her inducedcoma and began opening her eyes and communicating by nodding herhead.It was only then that we could allow ourselves to feel real hope andbegin posting some information on Facebook about Sarah’s progress.Her health was so precarious and we were so physically, mentally, andemotionally drained that we kept some of what was going on at thehospital private. Her care and being by her side has been our focus. Thanks to all who supported us through Sarah’s ordeal and yourunderstanding of our capacity to share what we could. It was yourprayers, hope, encouragement, and love that have carried Sarah tothis point and gave us strength.  The road to recovery is long and Sarah’s fight is not over. Sarah has apartially paralyzed diaphragm, which can happen during a complexsurgery like a lung transplant, and it is the reason why Sarah’sattempted extubation was unsuccessful this week. On Monday,Sarah’s doctors will perform a procedure called a diaphragm plicationto flatten the dome of the diaphragm, to provide the lung with greatervolume for expansion and hopefully ease extubation. This is a minorset back in the grand scheme of things. The important thing to us is that sweet little girl is back with us and isvery much alive. She is communicating, she has sat on the side of herbed and started exercising her arms and her legs. And she isdetermined than ever to walk out of the hospital and go home to herbrothers and sister. In fact, we have a goal of celebrating Sarah’s 11
th
 

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