We're Home . . . What's Next?

Well, after four days and two surgeries, Eddie is home and resting well. The kids were thrilled to see him, but I think he was more interested in sleeping than hanging out with his siblings :-)

He'll be taking a bunch of meds for the first five days or so but then will taper off. We're excited for the incision to heal and to get our Eddie back without the pain killers!

So what's next? We wish these surgeries marked the end of the battle, but unfortunately, we are only at the very beginning of a long and difficult journey. As with most organ recipients, Eddie will gain a healthy heart at the expense of his immune system. He'll be on immunosuppresants for the rest of his life to avoid organ rejection, and will need ongoing monitoring to ensure that his heart remains healthy and that he doesn't fall victim to all kinds of other nasty illnesses due to his weakened immune system. So this is just the opening round of what's sure to be a long, no-holds-barred, knock-down, drag-out fight.

As it stands now, we'll need to go back to the hospital this week to finish the transplant evaluations with Occupational/Physical Therapy, Neuropsychology, and Cardiology since they weren't able to complete before we left the hospital. Only when those evaluations are complete can they conference and formally submit Eddie's name to the transplant waiting list and assign a priority level. Based on initial conversations with the transplant team, they believe they will be able to list Eddie as a 1a status which is the highest priority. To qualify as 1a, a recipient typically needs to be hospitalized and have a life expectancy of fewer than 14 days without medical intervention, but because of Eddie's "aborted sudden cardiac death" episode a few weeks ago, he may jump to the top.

Once he is waitlisted, there is no guarantee how long it will take to find a matching donor. This is a pretty morbid topic so I'll leave it to you to decide how much you would like to learn about the process. A couple very good sites are the United Network for Organ Sharing and the Organ Procurement and Transplantation Network. Also, for those of you that are statistically-minded, Milliman Research publishes a triennial "U.S. Organ and Tissue Transplant Cost Estimates and Discussion" report with all kinds of interesting information including overall transplant costs, survival rates, and average wait times.

I'll talk about what happens after transplantation another time. I'm exhausted and really trying to stay focused on the here-and-now rather than getting too far ahead of ourselves. We are simply grateful to have another day with our wonderful boy and the joy that we feel now having him with us fortifies us for the difficult road ahead.

Thanks for your many thoughts and prayers on our behalf!