10 February 2012

All Clear

We heard from our cardiologist today confirming that the kids' ECHOs are clear. That is one weight, at least, lifted from our mind.

Overall, it was a good day at the hospital. Thankfully Whitney spent the week with us and helped chaperone the girls through their tests while I was with the boys. And Sarah hung out with Eddie in NeuroPsych while they ran him through a series of IQ and motor skills testing.

Our consult with Nutrition was really about how we can prepare Eddie for surgery . . . gaining another pound or so to be at optimal weight. So we've welcomed whole milk back into our kitchen and we'll be slathering some extra butter on his toast each morning! Not very impressive to Eddie apparently . . . since he fell asleep almost immediately :-)

We had a great meeting with Dr. Cohen (surgery) and he walked us through the organ selection process, surgery, and post-op recovery. We were surprised to hear that he'll begin to get calls from hospitals offering organs almost immediately. It turns out that there are quite a few organ offers, but the real challenge is finding an ideal match. Luckily in Eddie's case, Dr. Cohen can be more selective since his heart isn't in late stage decline. With a defibrillator giving him some level of protection from arrhythmia, he is not in immediate danger since pulmonary hypertension and general organ failure can be monitored over time. If he begins to take a turn for the worse, we'll have to consider accepting a "good enough" offer . . .

Finally, we met with Physical Therapy and Eddie basically got to throw a football, run, jump, kick a soccer ball, balance on one leg, and walk on a balance beam. Needless to say, he loved it! The purpose of the PT consult is to establish a baseline of physical performance so the therapists can help Eddie get back to normal after surgery. Doesn't hurt that he had some fun after a long day.

A big thank you to the wonderful staff at Seattle Children's. Can't say it enough, but we are so fortunate to have them in our backyard. Happy to pay the 520 toll and negotiate Montlake traffic if those are the biggest inconveniences.


  1. So happy to hear that the other kids are clear--a little more peace of mind is a great thing. And so happy that you had help from Sarah's sister. Thanks for keeping the updates on the blog. We think about you guys continually and are glad to hear what is happening. More prayers as you continue this process. Let us know if there is anything else we can do. Love you guys!

  2. Thanks for updating your blog after such a busy day. Happy to hear that kiddos are clear. Enjoy each other over the weekend.

  3. John, very happy to hear the kids are all clear, great news!!

  4. Thanks for the updates--so glad to hear everyone else is cleared and Eddie is all set to be on the transplant list! It sounds like some cookies from friends now would be great for him!

  5. Happy to hear that things are getting all sorted through! We sure wish we could help and would love to know when is a good time to chat! Please don't hesitate to ask for anything! Love you guys!

  6. Great news! We'll continue to keep you in our prayers and appreciate the updates. Eat up Eddie!

    Jennifer (Romer) Burr