After a very bad GI bleed leading to unresponsiveness, Cora was upgraded to a status 1B on the liver transplant waitlist. This essentially meant she was second priority nationwide. They also opened her up to receive any blood type organ. Cora waited 3 days before we got the call for a liver and was transplanted May 21, 2018 (almost 1 year after her Kasai surgery). After a long recovery with many bumps in the road, she has now been thriving at home since the middle of July. Now that she has finally received her life saving gift and has made it through what we hope is the worst, the battle we are now fighting is insurance. We are looking at about $30,000 in medical bills. We are grateful for all donations already received, as they have already helped us tremendously. We would greatly appreciate any extra help and please if you have had to face financial burdens due to an ill child let us know what ways you have come up with to raise money!
Our little Cora bean was born on April, 14, 2017. She was diagnosed with a rare liver disease known as Biliary Atresia on May 24. She went on to have a surgery (Kasai) that would temporarily prevent more damage to Cora's liver. She spent over a month at Loma Linda University Children's Hospital recovering from surgery and battling cholangitis (an ascending infection of the liver bile ducts that often happens with this surgery). We were informed that the Kasai surgery is a palliative procedure meant to buy more time before an individual would need a liver transplant. In good cases, an individual can grow into their adult years before needing a liver transplant.
As of today, we have learned that she is not improving and her liver is continuing to deteriorate. Her bilirubin levels continue to trend up, her jaundice remains the same, and her abdomen continues to grow due to her liver continuing to scar and to her ascites (fluid build up in the abdomen). Her medical team at UCLA has decided that she will be a good candidate to be placed on the liver transplant list. Cora is doing well at this time. Her biggest concern is her nutrition and inability to gain weight due to her condition. We are thankful that her liver is working enough for her to live comfortably now, but it is only a matter of time before she will go into liver failure and will need a liver transplant.
UPDATE (January 2018):
It it has been about 4 months since Cora has been listed. Her calculated PELD score is only 5, but she has gained exception points of 30, which will help her with chances on getting an organ donor. These past few months have been tough on her. She has been hospitalized 4 timescale due to GI bleeding. She has had multiple episodes of bloody stools and bloody vomiting due to her portal hypertension. She has had to undergo 3 upper endoscopies, 1 of which lead her to stay intubated on a ventilator for over a week. They discovered torturous esophageal varices veginning in her throat tracing all the way down to her stomach. Although her liver is functioning well enough, it has also placed her at a high risk for bleeding... which she has shown time and time again.. requiring multiple blood, plasma, and albumin transfusions. These holidays have been difficult on our family... as we have been in the hospital for the past month. We thank anyone who has donated funds to Cora and those who keep her in their thoughts and prayers. Please pray for a new liver for Cora.
We created this page to raise funds for the time when she will be receiving the liver transplant. ALL Funds we receive go towards medical costs, copays, lodging, commuting/gas, food, etcetera.
We appreciate any and all help that is given!
- Sarina Nguyen
- jakub Smutny
- Diana Podesta
- Stephen Mashburn
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