15 April 2012

Day 40

Happy Tax and Titanic Day . . . a seemingly appropriate combination of ignominious events to share the same date. Regrets to any of you celebrating a birthday on April 15th . . . at least this year the IRS was generous enough to let us file through tomorrow. Calling all procrastinators . . .

Below, the first complete Harper Family photo in a long time. We took Eddie out for a stroll around the ICU again today . . . this time sitting in a wheelchair with Sarah. What you can't see are the two nurses responsible for pushing the Berlin Heart compressor (under the laptop) and the rolling "tower of medicine" that accompanies Eddie wherever he goes (strategically placed to my left off camera).

Eddie had another good day today. For the most part, his vitals and labs are stable, no real fever, bleeding seems to be under control, and two ECHOs show only very small amounts of fluid in his pericardium (so no immediate danger of repeating his tamponade episodes). For this week, we'll begin working very closely with Physical Therapy and Speech/Nutrition to get him as strong as possible in advance of transplant.

Gratifying moment . . . our transplant surgeon stopped by this morning and wanted to let us know that he didn't think he had ever seen the staff rally behind a patient the way everyone has for Eddie. It probably helps that he's so darn cute, of course, but I know it's also a function of how critically ill he has been and how strong he has fought back. To top it off, there is a whiff of miracle about this boy and it's wonderful to see how many people he has inspired over the past several weeks.

To express its gratitude, Seattle Children's began sending Eddie delicious meal trays yesterday. Menu samplings include pureed maple pancakes, pureed egg souffle, pureed potatoes, and (my favorite) pureed macaroni and cheese. And as you can tell from the photo below, the culinary staff has some wicked creativity skills since Eddie's pureed corn entrée is even molded in the shape of, yep, an ear of corn!

For those patient souls still waiting for a real Eddie smile, I hope this clip satisfies. One of our beautiful transplant friends stopped by the other day and dropped off a gift for Eddie . . . the "magic" swimming clown fish (aka Nemo). It was a huge hit and his face says it all . . . even though he's not ready to completely give up on his Thomas engines.

Have a wonderful week!


  1. This is one amazing family! Great to see you all together on what seems to be a very good day for little Eddie. We will continue to pray for more good days on top of the couple you have been been experiencing. Eddie look happy and stronger then what one might expect given the circumstances - Incredible little guy you have. Thinking of you all often here in Millers Homestead - please reach out when/if needed.

    The Faccone's

  2. A few things to note/ask:

    1. Is Isaac really taller than you John? That young man sure is sprouting up!
    2. The family picture is just so great to see!
    3. I love the hospital staff for shaping Eddie's food!!! There is a great need for people who think about details like that I'm so glad they surround our little Eddie.
    4. This week is going to be great, I can just feel it.
    5. We love YOU all!

  3. It's great to see the whole family together for a bit. Glad there are good days with many miracles and thoughtfulness along the way.