Updated posted by Janet Ruddock Murnaghan 2 months ago
Thank you for taking the time...
Thank you for taking the time to support Sarah and donating. She is continuing to get stronger every day, with great progress since we have gotten home. She no longer is on oxygen support and sprints off of the ventilator every day with her lungs and muscles doing all of the work.
The big part of rehabilitation now is building back the muscles, which takes time. She does physical therapy every day and is now walking with a walker to support as needed. She loves to take walks in the neighborhood after dinner with the family and is so proud of her progress.
She is also back in school at home, with teachers coming in house four days a week. Her classmates and friends have been visiting and she is excited to going back to school, which will be next year.
Thank you again for the support as Sarah would not be with us today without what everyone did with us to make a change.
Created by Janet Ruddock Murnaghan on June 20, 2013
Have Questions? Contact the organizer of this campaign now:Contact
Use Facebook to Leave a Comment
Nothing gets posted to your wall. Only your Facebook name & photo are used.
A must read from The New England Journal of Medicine about Sarah and the issues that we fought for. http://www.nejm.org/doi/full/1 0.1056/NEJMp1307792?query=feat ured_home#t=article
posted by Fran Murnaghan 4 months ago
This week our family fully expected to celebrate the event weve been waiting 19 months for - our daughter Sarahs first independent breaths with her new donor lungs. Her doctors continue to wean her from her ventilator, her last two chest tubes were removed today we are taking steps to pr...epare her for extubation again. Were not out of the woods, but Sarahs health is trending in the right direction and we wanted to provide more detailed information as to what she has been going through. After we announced the overwhelmingly joyful news on June 12 that Sarahs lung transplant was a success, things quickly spiraled out of control. Though we had made Sarahs battle very public, we were completely emotionally unprepared for what was to come. That evening, as we waited for Sarah to be transitioned back to her room, an emergency code blue was announced. Sarahs vital signs had begun descending rapidly as her new lungs started to fail. We were devastated and could only pray as CHOPs surgeons performed immediate emergency surgery to transition Sarah to VA ECMO, a bypass 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 Primary Graft Failure (PGF), which occurs in 10 percent to 25 percent of lung transplants, resulting in the death of half of all patients affected by it. Further analysis of the first set of donated lungs revealed that the cause of the PGF was due to the quality of the donated lungs. Only 80% of donated lungs are transplanted, as lungs are often in poor condition after the donor's death. In Sarah's case, the donated lungs were 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 VA ECMO given her condition and that her only hope for survival was a second lung transplant. With an LAS score of 87, her surgeons listed Sarah for transplant again that very night, and the next day OPTN approved 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 her doctors prepared us for the probability that Sarah would die, either before a second surgery could take place or on the operating table. Three days later, on June 15, we learned that new lungs were available for Sarah. We were warned, though, that the lungs were high-risk because they were infected with pneumonia. They were Sarahs best and only hope. By 1 pm that same day, Sarah was wheeled in for her second transplant, performed by the same surgeon who did her first transplant, Dr. Thomas Spray. The second transplant operation was truly a success she made it through the surgery and no longer needed to be on VA ECMO, but her little body was very traumatized by all she had been through. Each day since then, her lungs have improved on x-ray and have continued to work better and better. As the days have gone by, she has needed less and less support from the ventilator. On June 21, seven days after the second transplant, Sarah underwent yet another surgery to close up her chest which her doctors had allowed to remain open so she could heal. Sarah was slowly brought out of her induced coma and began opening her eyes and communicating by nodding her head. It was only then that we could allow ourselves to feel real hope and begin posting some information on Facebook about Sarahs progress. Her health was so precarious and we were so physically, mentally, and emotionally drained that we kept some of what was going on at the hospital private. Her care and being by her side has been our focus. Thanks to all who supported us through Sarahs ordeal and your understanding of our capacity to share what we could. It was your prayers, hope, encouragement, and love that have carried Sarah to this point and gave us strength. The road to recovery is long and Sarahs fight is not over. Sarah has a partially paralyzed diaphragm, which can happen during a complex surgery like a lung transplant, and it is the reason why Sarahs attempted extubation was unsuccessful this week. On Monday, Sarahs doctors will perform a procedure called a diaphragm plication to flatten the dome of the diaphragm, to provide the lung with greater volume for expansion and hopefully ease extubation. This is a minor set back in the grand scheme of things. The important thing to us is that sweet little girl is back with us and is very much alive. She is communicating, she has sat on the side of her bed and started exercising her arms and her legs. And she is determined than ever to walk out of the hospital and go home to her brothers and sister. In fact, we have a goal of celebrating Sarahs 11th birthday at home on August 7! We will continue to focus our attention Sarah and her recuperation. To Sarahs new friends from around the world, we cant thank you enough for continuing to root for our little fighter.
posted by Fran Murnaghan 5 months ago
Wishing you strength, healing, and peace in your recovery process. You are a fighter, and fighters never, ever give up. You were meant to do great things Sweet Sarah Murnaghan, God has seen fit to lift you up and over that mountain. Love, hugs, kisses and prayers...always!!!
posted by Maureen Buchser 5 months ago
Recent Donations (247)
$21,448 raised by 247 people in 5 months.
2 days ago
17 days ago
18 days ago
19 days ago
19 days ago
21 days ago
21 days ago
21 days ago
21 days ago
21 days ago
1-10 of 247 donationsNext