05 February 2012

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!


  1. Glad to read the update. Sorry to see you were still awake at this time of night. I hope you will get time to rest and enjoy some peace with everyone together right now. And I know there will be many people ready to help with the long road ahead. Thinking of you all this fast Sunday!

  2. John & Sarah-
    Thank you for posting this blog. While I haven't seen you for a long time, please know that my heart aches for you and you are absolutely in my prayers. As someone who has now spent a lot of time in Childrens hospitals and in therapy for my child, I can understand the pain you must feel for your little Eddie. I know you guys are fantastic parents and have great perspective. I'll keep my eyes open here to follow Eddie's and your progress.


    1. Thanks, Tiffany. Has been far too long since we've caught up, but we did run into Wade and Kristen at a local 4th of July parade last year and they gave us a good rundown. Your thoughts and prayers mean so much and we should definitely catch up soon. All the best.

  3. Hugs to all of you, especially Eddie! My thoughts and prayers are with all of you!!

  4. Thanks for the update on your little sweetie. We are all keeping you in our thoughts and prayers. Sarah, I'll call you tomorrow.

  5. My sweet Sarah Jane, and John & family. . . Your dad just emailed me about your beautiful son and tears have filled my eyes as I've read your blog. I know that Heavenly Father will carry you through this, and that you will have strength to cope beyond what you would have ever thought you were capable of. And He will take care of your precious son. My heart goes out to all of you, I so wish I was closer to you and could be there to help. I love the pictures on your blog, keep posting those! Just know that I care and love you so very much. . . sending a BIG hug

  6. Sarah and John,
    Duane told me last week what was going on with Eddie. Know that he is in our prayers. We love you and know that you have the strength to get through this. Praying for the best outcome possible for Eddie!
    Love, Shauna & Kent

  7. Hi Sarah and John
    Jody (aka Mimi) here, Shannon's mom. I have been following Eddie's journey since you called Shan and Weston. My thoughts and prayers go out to your family, especially little Eddie. Wish I lived closer to help in some way. Prayer requests are out all over for Eddie, I do believe in the power of prayers. Big hugs to you all!