11 July 2012

Still Here . . .

Embarassing, really . . . that it has been over a month since the last time we wrote. So many things continue to happen and there is no shortage of things to write about, but going back to work and summer break have really wiped us out.

Considering the ups and downs, the close calls, and nerve-wracking months leading up to Eddie's transplant, it is a blessed fact that Eddie has recovered very well in the 2+ months since the operation. Not even a bandage is left . . . just angry scars which will fade over time. He smiles readily and wrestles with brothers and sisters. He walks the stairs and sings and loves to read . . . nothing sweeter than seeing brother reading a book to him in the library yesterday.

For me, the months in the ICU seem like a distant memory. Sarah may feel differently. It was as if we stepped into an alternate reality . . . where deeply invasive surgeries and toxic medications were the norm . . . where such treatments were in fact demonstrations of love and generosity from total strangers. These strangers, soon to become fast friends, were reaching the limits of their professional wisdom and were tapping into their surprisingly vast stores of creativity.

We thank God every day for those beautiful nurses and doctors . . . we miss them terribly and feel a surge of strength when we make surprise visits to the ICU while waiting for Eddie's clinic visits.

Family, friends, neighbors have all done so much and have held our hands and soothed pained hearts (not to mention fed hungry bellies too many times to count). Most would say it is unnecessary, but we spend time every day thinking how we can say thank you . . . not to repay a debt (impossible) but to allow a glimpse of how important each act of service has been for our family.

Sarah will head back to the clinic with Eddie tomorrow . . . we are now going to hospital once every other week for ECHO and clinic. He is down several meds and will be off the steroids within the next week. We wish he would eat more . . . it is still like pulling teeth to get him to eat his meals, but at least he is eating a broader variety of foods. Can you believe we've had to bribe him to eat things like bacon? And he still won't touch Nutella!

More later . . . including pics.


  1. Good to see the update.
    Love to you all.

  2. Stumbled upon your blog. We were just told that our 9 year old son has restrictive Cardiomyopathy and needs a heart transplant. We meet with the team on Aug 9th. Your blog has been helpful in answering a lot of our questions. Our son looks and acts so healthy it is hard to believe it is happening. We only found out in January. He was having some chest pain and an echo showed this.

    1. Thanks so much for the note, Melody. I'm very sorry to hear about your son since . . . we know the path well. We hope he, unlike Eddie, is able to wait for his transplant out of hospital. Eddie seemed so healthy at first, but his heart quickly failed to the point he needed to be on ECMO and, ultimately, a VAD.

      We'd love to connect via email if you're interested. My email is xibixibi (at) yahoo (dot) com. All the best to you and your family. I can assure you that the road will be very difficult, but will lead to indescribable blessings as well.

    2. Keep in touch, Melody. We'll be thinking of you and your son as you continue on your journey... one that could very well be MUCH less harrowing than ours has been. I'll be praying for that. As John said, we be really happy to commiserate/answer any other questions you might have, so please don't hesitate to reach out. We don't know too many (or any?) restrictive cardiomyopathy patients, so we would love to hear more about your experiences too.

  3. I'm so glad to hear things are still going well. As for angry scars - Vitamin E oil! It is only a fraction of the cost of Mederma and it made my surgery scar fade quickly.

  4. Hey John - Eddie resilience continues to be awesome and inspiring. Doug, Joel and I were just talking about you and Eddie the other day... all good of course :-), but noting the same... and wishing you many more days and weeks like the last several. Hope to catch up with you soon. Tim

  5. Thanks, Tim . . . the handsome one, that is :-) Can't wait to catch up with the team again. Really appreciate the support and know that Eddie is recovering in large part due to loving family and friends. Talk to you soon!