Sunday, May 16, 2010

Lion Needs a New Heart

Hello everyone. It’s been a crazy few days. After the Genetic tests came in, testing positive for Leopard Syndrome our cardiologist set a new appointment with us. The original follow up was set for late May. We had this appointment on Monday. There they observed how he was doing and also performed a new echo on his heart. The result showed a decrease in heart function and a worsening of the obstruction to his blood flow, so his HCM is actually getting worse. When the doctor came in to give us this news she then proceeded to tell us that we needed to consider a transplant. Later talking about it, Tammy and I both feel that we've been emotionally prepared for this, as we were very anxious to get the process rolling. Next a transplant coordinator came in to talk to us. She said that the process to get someone on the transplant list usually takes 1-2 weeks. We told her that we wanted to get going on it ASAP, right then our Cardiologist chimed in... "no, we're getting on this now" what proceeded was nothing short of a miracle. Over the next 4 hours each of the groups that we needed to meet with came in one by one, Nutrition, Pharmacy, Social Work, Financial, Surgeon, Genetics, we got it all done in one day. The coordinator said that in her 20yr of doing this, she has never seen things line up so quickly!! We really believe things are lining up for Lion to get this done, and get him the new heart that he so desperately needs. Yesterday we had some blood work drawn on him, and we shared our concerns with the Doctors about a decrease in his appetite and also and increase in his fussiness. They decided to admit him and we are back in the hospital for observation. I'm so proud of Tammy and how strong she has been the last couple of days. You know, there are hard minutes, hours, and even days, but we want to let all of you know the overall feeling of peace and comfort that we as a family have. We are so grateful for the love, prayers, faith, and support of all of our family, friends, and many who don’t even know us but are offering faith and prayers anyways. We know that there is enough faith pooled together to make this right if it’s God's will.

Anyways today the cardiologist is presenting Landen's case to the transplant review board. So we should have an answer back today as to his eligibility for a transplant and his initial Priority Status on that list. We are so grateful for the wonderful doctors and nurses who have helped us along the way. Primary Children’s in SLC rocks!! We'll keep you posted!


Joe Tam & Fam

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