13 April 2012

Catching Up

Things change so quickly around here that it's hard to remember the details if I skip a day or two, so forgive the scattered update. And before I get to Eddie's status, I just wanted to remind everyone (including ourselves) why we moved to Seattle in the first place. After the endless months of drizzle, rain, sleet, snow, and general sunlessness, we are suddenly blessed with this . . .

And this . . .

And this . . .

And this . . .

One of the blessings of living at Seattle Children's right now are the gorgeous views of Lake Washington, augmented by the many blossoming cherry and tulip trees in Laurelhurst.
When all of the current craziness dies down, we'll gladly accept reservations from out-of-town visitors for next spring / summer. There's really nothing quite like it . . .

So to Eddie . . . he is stable after Tuesday's surgery and actually had very good moments today. The key story continues to be the search for an acceptable balance between bleeding and clotting and we're still not sure where that is. We turned the Heparin off after surgery, but started dialing it back up about 24 hours later. The ICU physicians are super concerned about the risk of clotting and stroke since that has been their experience with several previous Berlin Heart patients. We are continuously monitoring his hematological labs and making adjustments every day. At the moment, his chest drainage is still clear and unbloody with Heparin at about 75% of previous levels . . . that is good.

From a clotting standpoint, his pump looks pretty good, but he does have a spot of fibrin buildup in one valve. We are watching closely and will not hesitate to change out his pump again if needed.

Tomorrow morning, we will take Eddie to the fluoroscopy lab to perform a more intensive swallow test. By giving Eddie liquids of various thickness mixed with barium, we can watch a live picture to see exactly how well he is swallowing. The video below is a fairly good representation of what Eddie will be subjected to except that I assume they won't have him try to eat anything . . . just drink. And if all goes well, we should be able to accelerate his liquid diet regimen (aka apple juice!) . . . fingers crossed.

Sarah and I had the chance again to participate in Eddie's Berlin Heart dressing change this afternoon . . . a process which never ceases to amaze (or shock) us. It's hard to believe a body can handle this kind of intentionally inflicted trauma, but we are thankful for diligent nurses that take such care to treat Eddie's many wounds. While we may have needed to turn away from time to time, we were glad to assist and couldn't help but feel a unique and intimate connection with Eddie. The raw physicality of the experience brought to mind Paul's famous "fleshy tables of the heart" and Shakespeare/Shylock's "pound of flesh." I'll never read those words the same way again :-)

Before changing his dressing, the nurses gave Eddie a cocktail of Fentanyl and Versed to take the edge off. I think we can officially declare this to be the perfect medicinal match for Eddie since he spent the following three hours as lucid, talkative, funny, and spontaneous as I've ever seen him. It was wonderful.

On the homefront, some good news . . . and some not-so-good news. First, our newest Cub Scout took third place in his first Pinewood Derby. Congratulations on a great run!

Unfortunately, our aspiring ballerina appears to have broken her foot and will need to wear a "boot" 24/7 for the next three weeks at least. Ah, youth. While the picture below is not the actual image of her foot, it looks almost identical to the film we saw this morning at the clinic. That would be a fractured 5th metatarsal :-(

Looks like awesome weather this weekend so hope everyone has plans to enjoy it! Bedtime.


  1. Wonderful News on most fronts! After looking many many times for updates, each day, So So Grateful for this one.

    I cannot imagine the continual compassion and great care being so closely attached to Eddie's care both inside him and on the external sides. Loving care inside and out, both Family and Friends and extensions, those who have become a part of the actual experience through this blog. So many are watching from far places and trying to understand and feel these great miracles! So many looking forward to better longer lasting periods of love and growth and stability before Eddies' transplant.

    Looking in from the outside and from the close association of last week being there in Seattle, we saw the external workings of family and neighborhood and Church firsthand. What a blessing to be in such great care with such great people. So many loving gestures, so many working, wanting to lift and bless. Thoughts of kindness and love from all sides.

    The pictures on todays post illustrate the exterior beauty of Seattle but we saw first hand the hearts of many of you, close up... through your great care and compassion for the whole of Eddies' family. Thanks to all of the Hospital staff, Nurses and Doctors for taking care of Eddie and John and Sarah. Thanks to all those who so lovingly shared the experiences and extended themselves in any way to bless the family. We love you all and are praying with you for Eddie and his family.

    Grandpa 'D'

  2. Those pictures make me feel like I could endure such dreary drizzle to enjoy such splendor! Spring indeed is a blessed thing. Poor Lucy! I'm sure that's so frustrating to not be able to dance. When it rains, it floods. Isn't that how it goes? Love you guys!

  3. We think of all of you everyday. And enjoy the times that we come across you at the hospital. Thanks for the continued updates on Eddie. Cant wait for the day that he is able to enjoy this wonderful new place you have come to call home. We keep you all in our thoughts and prayers.

  4. Such a beautiful blog today as I scrolled down but seeing Eddie's face brought the biggest smile to my face and to my heart. He is in our prayers everyday! Poor Lucy, can't imagine what Annie, Molly or Maggie would do if they couldn't dance around! Or Trevor, he loves dancing with his sisters. Here's to hoping Eddie will feel good enough to do some dancing with Lucy in the weeks to come....Jody Scroggins

  5. Been checking on your blog and keeping Eddie in our prayers. I feel like a far away stranger peeking into your lives. But I want you to know that we love you and are amazed at your strength. Our prayers and hearts are with you. Xoxo Tiffany (Colton) Kasteler and fam