Oak Knoll Mom Posted January 3, 2010 Share Posted January 3, 2010 My 12 week old niece, Ruby, is in PICU with RSV/pneumonia. While there, the doctors discovered a rare congenital heart defect called Truncus Arteriosus. Right now the doctors are waiting for her to get over the RSV so that she can be transported to MUSC for heart surgery. We've set up a facebook group called Praying for Ruby to encourage my brother and sister-in-law with prayers and thoughts and to keep everyone updated on Ruby's progress. Thanks for your thoughts and well wishes. Quote Link to comment Share on other sites More sharing options...
TravelingChris Posted January 3, 2010 Share Posted January 3, 2010 Praying here. Quote Link to comment Share on other sites More sharing options...
Oak Knoll Mom Posted January 3, 2010 Author Share Posted January 3, 2010 Praying here. Thanks, Christina. Quote Link to comment Share on other sites More sharing options...
jensway Posted January 4, 2010 Share Posted January 4, 2010 Ruby and family are in our prayers. :grouphug: Quote Link to comment Share on other sites More sharing options...
jenL Posted January 4, 2010 Share Posted January 4, 2010 Wow... I'm so sorry to hear this. Saying prayers for her and your family. :grouphug: Quote Link to comment Share on other sites More sharing options...
Sugarfoot Posted January 4, 2010 Share Posted January 4, 2010 Praying here. :grouphug: Quote Link to comment Share on other sites More sharing options...
Mommyfaithe Posted January 4, 2010 Share Posted January 4, 2010 My 12 week old niece, Ruby, is in PICU with RSV/pneumonia. While there, the doctors discovered a rare congenital heart defect called Truncus Arteriosus. Right now the doctors are waiting for her to get over the RSV so that she can be transported to MUSC for heart surgery. We've set up a facebook group called Praying for Ruby to encourage my brother and sister-in-law with prayers and thoughts and to keep everyone updated on Ruby's progress. Thanks for your thoughts and well wishes. Praying here... My ds had RSV when he was 8 weeks old. It was horrible. We all had it so badly that the doctor sent me straight to the ER... Praying for Baby Ruby! Faithe Quote Link to comment Share on other sites More sharing options...
Lolly Posted January 4, 2010 Share Posted January 4, 2010 I will most certainly send prayers for Ruby. Quote Link to comment Share on other sites More sharing options...
Carol in Cal. Posted January 4, 2010 Share Posted January 4, 2010 ...connected to the lung? I have a niece with that, and just to encourage you, she had the surgery when she was 15 months old, and has been doing great with a tube ever since. She is now 11 years old, and quite active. She doesn't have to take any special drugs, and she sees a pediatric cardiologist annually. The only thing is that she will have to have the tube replaced with a bigger one when she is a little older--probably around age 14--but they don't think she will need any more attention after that for the rest of her life. Quote Link to comment Share on other sites More sharing options...
Cathy in IL Posted January 4, 2010 Share Posted January 4, 2010 My son was in the PICU last year on Christmas Day with RSV. I will pray for Ruby and her family. The PICU is such a sad place to be. Quote Link to comment Share on other sites More sharing options...
clarkacademy Posted January 4, 2010 Share Posted January 4, 2010 I am so sorry I hope all works out well. Quote Link to comment Share on other sites More sharing options...
muffinmom Posted January 4, 2010 Share Posted January 4, 2010 Praying :grouphug::grouphug: Quote Link to comment Share on other sites More sharing options...
Parrothead Posted January 4, 2010 Share Posted January 4, 2010 Prayers. The doctors and staff at MUSC are terrific (at least they were last time I lived in the area). :grouphug: Quote Link to comment Share on other sites More sharing options...
Oak Knoll Mom Posted January 9, 2010 Author Share Posted January 9, 2010 Ruby is progressing nicely. She seems to be slowly recovering from her pneumonia and may be off the ventilator by Monday. Surgery is planned for the middle-end of February. Thanks for your continuing prayers. Facebook group Praying for Ruby Quote Link to comment Share on other sites More sharing options...
plain jane Posted January 9, 2010 Share Posted January 9, 2010 Ruby is progressing nicely. She seems to be slowly recovering from her pneumonia and may be off the ventilator by Monday. Surgery is planned for the middle-end of February. Thanks for your continuing prayers. Facebook group Praying for Ruby Glad to hear the good news, and thanks for updating. :) Quote Link to comment Share on other sites More sharing options...
Brigitte Posted January 9, 2010 Share Posted January 9, 2010 Hugs and prayers being sent out for the little one. Quote Link to comment Share on other sites More sharing options...
OneRoomSchoolHouse Posted January 9, 2010 Share Posted January 9, 2010 :grouphug: Quote Link to comment Share on other sites More sharing options...
Oak Knoll Mom Posted January 19, 2010 Author Share Posted January 19, 2010 New update about Ruby: The doctors did genetic testing to determine whether or not the heart condition is caused by a chromosomal deletion. The test results show that Ruby has DiGeorge syndrome. This was very sad news as DiGeorge syndrome has lots of other life-long challenges besides the most immediate concern with her heart. She's having trouble getting off the ventilator, so it looks like heart surgery is going to be sooner rather than later. We'd rather it be later to give her a chance to regain some of the strength she's lost over the past 2 1/2 weeks, though. She is also having blood in her diapers and the doctors are being very aggressive is determining the cause. One very serious possibility is that she has necrotizing enterocolitis. Please pray that the blood is just irritation from her ventilator. Thanks, Robin Praying for Ruby Quote Link to comment Share on other sites More sharing options...
Blessedfamily Posted January 19, 2010 Share Posted January 19, 2010 I'm praying. Quote Link to comment Share on other sites More sharing options...
Impish Posted January 19, 2010 Share Posted January 19, 2010 Praying :grouphug: Quote Link to comment Share on other sites More sharing options...
newlifemom Posted January 19, 2010 Share Posted January 19, 2010 I have been praying. I joined the facebook group and have been receiving updates, but have not seen this one. Thank you. Quote Link to comment Share on other sites More sharing options...
JudoMom Posted January 19, 2010 Share Posted January 19, 2010 New update about Ruby: The doctors did genetic testing to determine whether or not the heart condition is caused by a chromosomal deletion. The test results show that Ruby has DiGeorge syndrome. This was very sad news as DiGeorge syndrome has lots of other life-long challenges besides the most immediate concern with her heart. She's having trouble getting off the ventilator, so it looks like heart surgery is going to be sooner rather than later. We'd rather it be later to give her a chance to regain some of the strength she's lost over the past 2 1/2 weeks, though. She is also having blood in her diapers and the doctors are being very aggressive is determining the cause. One very serious possibility is that she has necrotizing enterocolitis. Please pray that the blood is just irritation from her ventilator. Thanks, Robin Praying for Ruby I just joined the FB group and will be praying. Quote Link to comment Share on other sites More sharing options...
Starr Posted January 20, 2010 Share Posted January 20, 2010 :grouphug: Poor wee girl. I'm praying. Quote Link to comment Share on other sites More sharing options...
melmichigan Posted January 20, 2010 Share Posted January 20, 2010 We will be praying. :grouphug: Quote Link to comment Share on other sites More sharing options...
Krista in LA Posted January 20, 2010 Share Posted January 20, 2010 My dd had rsv around that age and it was horrible enough on its own. I can't imagine the added stress of finding out about the heart. I will be praying for her. :grouphug: Quote Link to comment Share on other sites More sharing options...
Jean too Posted January 20, 2010 Share Posted January 20, 2010 Praying. Quote Link to comment Share on other sites More sharing options...
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