Autopsy results

We met with 2 doctors from the heart failure team (a small group of specialized cardiologists) and the social worker today to go over Julia's autopsy results. Fortunately, there were no surprises. That was our greatest fear... that they would come back and tell us, "You know, we actually don't know why Julia died." Thank goodness, that was not the case. Everything confirmed that it was cardiomyopathy in combination with her AV Canal heart defect that caused her death. As Dr. Hollander put it, "One disease made it harder for the heart to work and the other made her heart have to work harder." We found out that her heart was actually twice the size and weight of a healthy heart her age. We still don't have any genetic results back from when Julia got genetic testing. We're waiting on that. It shouldn't be too much longer. However, the genetic tests are not always conclusive. From what I understand, there is only a 60% chance that they will be conclusive. Therefore, Bob, Mattie, and I all have to get echocardiograms this year just to check out our hearts. We're not too worried about it, but we must admit that it a small lingering dark cloud over our heads. Cardiomyopathy is still not a fully understood heart disease and it affects people differently and at different points in their lives. Someone could have cardiomyopathy and die of something completely different at age 92. Then there is Julia who only lived 82 days. All this shows me again how complex the human body is and points to an intelligent Creator. There is so much we know and yet a deep ocean of things we still don't know about our bodies and about Creation (and never will.)

I have to mention again, how cared for I felt by the Lucile Packard doctors. The doctors and staff that work there are a special group of people that obviously are doing what they do for more than the money. They truly love what they are doing and they value the relationships they build with the families. Dr. Hollander basically said, "Once you are part of the Lucile Packard family, you are always a part of it, even if your child is discharged or even passes away." They invited us to call anytime and set up appointments or meetings even just to say hello. I feel so blessed, despite the horrible circumstances, that we were able to be part of the Lucile Packard family.