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Shayde passed out Jan 2014 and was careflighted to Childrens Dallas. She was listed at 1A for two weeks but was then denied her 1A listing and was moved back to a 2.... She was then put on a heart monitor so that our Drs could monitor her heart 24/7! On November 20th, we received the call that a heart was available and it was time to do the transplant! Shayde went into surgery on November 21st at 1:00 am. The new heart just didn't want to work and she was in the OR for over 12hrs. They had to re-open her chest to do compressions to save her. They left her chest open and she was stable until early Sunday morning when Shayde went into cardiac arrest and was placed on bypass/ ECMO with a non-beating heart. She has also suffered a 40-50 minute lack/decreased supply of oxygen to the brain as a result of the cardiac arrest, although the heart was being manually pumped for that time. We said goodbye to Shayde, Sunday, November 23, 2014.
Five yrs ago Shayde and Emily were diagnosed with Restrictive Cardiomyopathy. With no cure both girls were placed on the Transplant list 4/3/08.Emily received her gift of life (new heart) 1/9/09. Her sister Shayde is still waiting for her gift of life. Emily went into Acute Rejection 9/13/12 and had to have a mechanical pump placed in her tinny heart so that she could live. This family has been torn apart over the last few weeks in order for her mother to focus on Emily's new medical needs. Emily and her mother had to move to RMDH of Dallas to be closer to Children's Medical and their team of Drs. Shayde is staying with grandparents in Abilene and their younger brother is staying with his father. We are praying for quick healing for Emily and the gift of life for shayde so that this beautiful family can reunite very soon! (We are working on a website that will have more information on the girls and their disease) We are also setting up a Medical Needs Trust for the Smith Family to help with their extensive medical bills and living expenses .
9/2012 Emily had Acute cellular rejection and Antibody-mediated rejection (AMR)
We fought hard with four round of rituximab but she was getting worse after her 4th heart Cath in 2mths she was still a 2R we tried a new Drug Campath another form of chemo. But before we could see if this would work our Drs didnt think she was gonna make it! So she was again listed at a 1A in December 2012. I was called in by our team of Drs to have "the talk" and was told we had run out of options we could put her back under with the LVAD again but they couldn't promise me we would have a heart in time, or I could take her home (to the hotel by the hospital) and spend this time with her and our family for christmas. I chose to take her "home" and spend whatever time she had left with our family! The day after Christmas Dec 26, we got the call we had a new Heart for Emily!!
We have had a few bumps in the rd after transplant but Emily is doing good 1yr post transplant!! Thank you God!! And our amazing team at Childrens Medical Center Dallas!!
Here is a news story with the family http://www.youtube.com/watch?v=PpSgP5kVyvA
- kerriebears is sew beary blessed
- Donna Chaffins
- Angel Wilson
- william wallace
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