Transplant.

We've handed our child over into the hands of capable physicians and God twice now for open heart surgery. I’ve watched as he was taken beyond the line that separated him from us and felt the awful pit in my stomach and waited with the knowledge that I can’t do anything for him. Turning your child over to a physician for any medical procedure is hard; turning your child over for a life-threatening surgery is something I don’t think I can put into words.

Heart Failure. It feels every bit as scary as it sounds. In Eli's case, there is no cure, no recovery, no magical pill that will restore function. His heart is failing. I’ve wrapped my head around it. It took a range of emotions. From shock to disbelief to fear to anger to gratitude and every emotion in between. The first few days I couldn’t even say the words heart failure. We just told everyone his heart wasn’t working too well or that he had decreased function in his ventricle. I can say it now. Others my not be ready to hear it, but I’m his mom and I have no choice but to accept it and move ahead, looking to the future. 

Yesterday we began the process of “getting on the list.” We still hope to have a bit of time before Eli actually needs a transplant but, his docs all feel that now is the time to get this process started, and not wait until it is an emergency situation. Although we have been told he is very critical, no one really knows how much time until his heart just gives out. Instead of waiting for that to happen, getting him placed on the list will give him a better chance at getting a heart and not just a heart, but a perfect match.

Monday we will meet with a few people. Few of them being the transplant pharmacist, social workers and financial advisors. 

Lastly, we had a bunch of labs and blood work drawn to test all the things they need to know about his heart and blood to get him on the list. He still needs a few more tests, but is more or less moving towards the direction of getting listed. That should do it. From there Eli will be presented to a board of cardios and surgeons. If all are in agreement that transplant is the best course of action, he is presented to the team who decide who gets listed and who doesn’t at Cincinnati Children's. If he is approved, he is listed, and the days of living with his half a heart are numbered.

It has been said that a journey of thousand miles begins with one step.  We are taking this journey One. Slow.  Step/Day. At. A. Time.