A Heart and Liver for Griffin This week we received confirmation that our son, Griffin, would need both a heart and liver transplant. Griffin is a self-proclaimed history nerd, gamer, and Boy Scout, but more importantly he is a kind, compassionate, and loyal friend who reminds us every day just how precious life is. In fact, Griffin was the inspiration for me becoming a registered nurse and the reason I spent the last 8 years in the Cardiovascular ICU at Phoenix Children’s Hospital where I had the honor of walking alongside other families as they faced some of their most challenging moments with their own heart warriors. I cannot imagine a world without him. Griffin’s Story Griffin was born “healthy” on October 12, 2007, in southern California. Alex and I were overjoyed to add to our little family, but as I held him in my arms, my mother’s intuition told me that something was very wrong. Within hours he was transferred to the NICU. There they did an echocardiogram and found that Griffin’s heart had not formed properly. He was diagnosed with Hypoplastic Left Heart Syndrome (HLHS), which in simple terms means that he was born without a left ventricle in his heart or “half a heart” (as Griffin explains it). Our newborn was quickly sent to Children’s Hospital of Los Angeles (CHLA) where we met the surgical team and they scheduled his surgery, called the Norwood. This would be the first of three life saving surgeries. Griffin’s little heart could not wait, so at just 3 days of age the surgical team fought through two Code Blue events providing lifesaving measures to help him survive the operation. Miraculously, Griffin recovered well and came home just one month later. The next two surgeries Griffin needed were called the Glenn (at 4 months old) and the Fontan (at 2 ½ years old), but he continued to recover well. Over the years Griffin has needed several heart catheterizations and procedures to monitor his health and heart function and we are incredibly grateful for the medical professionals who have walked alongside us. Griffin’s Future Today Griffin is 15 years old, and although he was born with Hypoplastic Left Heart Syndrome (HLHS), our heart warrior has lived a fairly healthy life. Then suddenly in November, Griffin suffered a GI bleed from an unknown source. Among the tests performed, was an esophagogastroduodenoscopy (EGD) which showed some small varices or enlarged veins. The team checked again two months later and, when they did, the varices had grown in size, requiring the placement of two bands to attempt to minimize the risk of bleeding. About 2 weeks after the procedure, Griffin suffered a sudden, very large, and very scary episode of vomiting blood. He was rushed to the hospital where he was given 4 units of blood, and so started our journey to transplant. The other significant complication is that Griffin’s heart defect has caused Fontan Associated Liver Disease (FALD), and he now needs not only a new heart, but a new liver as well. This is very rare in pediatrics and has only been performed about 2 dozen times in the US. He will be the first in Arizona. Our Request Our family is asking for help to cover the heavy medical costs associated with a double organ transplant. Until his perfect organs come along, Griffin will be admitted to the hospital where he will live full-time until his surgery. We must cover the out-of-pocket maximum deductibles for insurance ($15k) twice this year due to a job and subsequent insurance change. Costs like food and travel to and from the hospital will quickly add up, and both of us will be without an income for at least a couple weeks after his transplant in order to be by his side in the hospital through the most critical stages of his recovery. Alex and I have two other children at home who will need support during the hospitalization, and there are additional costs due to transplant medications that are not covered and can be several hundred dollars a month(this medication cost could go on for years). If you have the ability to help, any and all donations will go towards Griffin’s care and supporting our family, we so appreciate your generosity. It is the love, support, and care of those around us that has made the difference on this journey. Thank you for your consideration. “I can’t wait to feel better after my transplants and go on my first ever week-long backpacking trip with my Dad” -Griffin Montejo Griffin's Transplant Journey King of Hearts - Facebook
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