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.

Weekend Happenings

Since Thursday's excitement, we've been focused on helping Eddie rest and recover which he is doing pretty well. As we speak, the nurses are reading to him and he's fighting the urge to fall asleep. His recovery seems to be on par with the Berlin implantation . . . slowly exercising his vocal chords and muscles. We hope that by the middle of the week he'll be back to the same level of energy as last Saturday . . . when he was out of bed, drinking juice, and playing with his toys.

I haven't written much about the rest of the family since Eddie has been the center of attention, but with the beautiful weather this weekend, probably a couple things worth mentioning.

First, Pinewood Derby week is upon us and Dad has been behind schedule . . . as of Saturday morning, Ian's car still looked suspiciously like a rectangular block of wood. So out came the jig saw, sander, and spray paint and we spent the early afternoon creating our masterpiece. Since we're still waiting to add the racing stripes, you'll have to wait until Wednesday to see the finished product. Welcome to Cub Scouts, "Phil"!

Of course, before we could work on the car, everyone had to lay waste to the neighborhood landscaping in the 3rd Annual (I think?) Miller's Homestead (Phase II) Easter Egg Hunt! (I sense a really catchy marketing jingle coming on for next year). Everyone had a blast as evidenced by the photos below . . . look at that blue sky! Viva la spring in the Pacific Northwest.

As if Easter Egg hunting and Pinewood Derby car building wasn't enough, we managed to pile the kids into the van and visit Eddie at the hospital. And then (joy of joys), grandma offered to sit with Eddie while the Harper clan went off to enjoy the afternoon on the waterfront. What started as a valiant effort to traverse Marsh Island (you'd think the name would have been enough of a warning), quickly became a canoeing trip around the arboretum. Funny how much easier it is to navigate the channels without the lily pads!

(DISCLAIMER: Before the sharp-eyed critics notice that the south pavilion of Husky Stadium is still standing, I admit these pictures were taken last summer . . . but it really was this beautiful yesterday, I promise. Where was my camera when I needed it?!)

Some Easter thoughts to come in a separate post . . . we love you!