21 April 2012

Saturday Snaps

Another good day with Eddie out of bed quite a bit. Still not ready to test out his legs, but happy to test drive his "cheesy" smile.

As most of you will remember, it was three weeks ago today that Eddie got out of bed the first time. Wonderful photos and lots of enthusiasm. Then Sunday happened . . . and was followed by ten excruciating days of uncertainty, three open chest surgeries, and most importantly, an amazing recovery.

Needless to say, we are cautiously optimistic about the week ahead for Eddie.

Gastronomically speaking, he's pretty attached to milk, water, and fruit roll-ups right now. The milkshakes, waffles, chocolate cake, and other "high lipid content" foods we're pushing at him get the cold shoulder. Not surprising, really, considering that he's being infused with a pretty high-calorie mystery cocktail through his NG tube. Bon appétit, Eddie.

Also some photos of our brief expedition to Seattle Center for the opening day of Next50. My Microsoft colleagues will recognize our gnomish friend making guest appearances all around the city.

And finally, April 21st can't go by without wishing our friends in the UK and Commonwealth nations felicitous birthday celebrations for the lovely Elizabeth Alexandra Mary Windsor. Happy 86th!

19 April 2012

Donate Life

April is National Donate Life Month in the United States and we encourage everyone to visit the DonateLife website and read some of the amazing stories of people who have turned tragedy to hope.

While many countries practice an "opt-out" organ donation model, the US requires that citizens "opt-in" individually as donors. Sadly, while the vast majority of Americans support the idea of organ donation, many simply don't get around to documenting their choice proactively before tragedy strikes.

We know that Eddie's future depends on another family's selfless donor decision. To research organ donation and officially register you and your children as organ donors, follow the link on the Donate Life America website, or directly here.


18 April 2012

Hemodynamics and Eddie

As mentioned previously, the most difficult element of Eddie's treatment at this stage is the hemodynamic balancing act that keeps both bleeding and clot development to a minimum. Clearly, it would seem impossible to have both (or neither, as we would prefer), but it's not always that simple as was evident in this episode from two weeks ago where we did have increased bloody output combined with cardiac blood clots.

Yesterday evening, we noted once again that Eddie's chest tube output was decreasing (sign of clotting) and the output seemed bloodier. His central venous pressure (CVP) was also climbing. At the same time, we saw his Berlin Heart filling much better than previously so, as usual, there were counterbalancing issues at play.

Around midnight, his chest tube stopped draining altogether and another ECHO was called for to see if, once again, we were going to find pericardial effusion and another trip to the OR. Eddie wasn't showing the same outward signs of distress as in previous episodes (mottled skin color, poor perfusion, etc.) so we weren't sure what to expect. Luckily the ECHO showed little to no fluid buildup and we decided to watch him closely overnight and then make more concrete care decisions in the morning.

During today's rounds, and after a couple overnight adjustments to Eddie's Heparin dose, we again had to acknowledge that data-driven hematological models were going to be woefully inadequate for explaining Eddie's responses to treatment. Of course we will continue to run all the standard hematological labs, but for making treatment decisions, we would need to focus on old-fashioned hands-on observation.

In the late morning, Eddie's chest tube began draining again very slowly. This was good news for two reasons: 1) it proved the chest tube was still patent (open), and 2) it seemed that drainage volumes could finally be actually declining. Four weeks after implanting the Berlin Heart, it could be that he wouldn't need a chest tube for much longer . . . a hope we're trying not to get too attached to since we know how quickly things can change.

Most encouraging right now is the fact that Eddie is eating and drinking fairly consistently. He is most interested in drinking water and milk (goodbye apple juice?) and eating Cheez-Its, SweetTarts, M&Ms, mashed potatoes, and Ritz crackers with cheese. Hey, gotta do what you gotta do to get this boy to eat!

Behaviorally, Eddie is doing better every day. Smiles are much easier to come by and he loves playing with his stuffed animals, puppets, and other toys. We took him for another walk around the unit today (in his wheelchair) and I think he looks less fragile that he did last week. Our nutritionist is single-minded in her quest to fatten Eddie up!

17 April 2012

A Love Letter

This is not a love letter for Eddie although I certainly do love him. He's an amazing boy and continues to surprise us each day with new feats of skill. Today, it was eating pretzels and Ritz crackers and knocking the socks off the speech therapist, learning to growl like a dog when he can't stand the pain of his dressing change anymore, and preparing for a career on the DJ circuit with his toy truck which plays an interminable loop of "Funky Town" . . . seriously . . . watch the clip and be amazed.

This is also not a love letter to my other four amazing, wonderful, handsome/beautiful children . . . who have held together miraculously well while their parents have been MIA for the past six weeks. Seeing their little brother hooked up to a plethora of machines, tubes, catheters, pumps, and wires is hard, and yet they are all smiles when they are with him. And in the middle of all this commotion and uncertainty, they are rock solid. After years of being a providing parent, feeling that emotional and spiritual sustenance was going only in one direction (host to parasite?), I marvel at how much the tables have been turned. You, my infuriatingly wonderful children, are northing short of miraculous . . .

Nor is this a love letter to countless family members, friends, and co-workers who have visited us in the hospital, brought gifts, cared for our children, cleaned our house, cooked and delivered meals, colored pictures, recorded songs, prayed and fasted for us, or in some cases, gave us space to breathe, contemplate, cry, and regroup. No, this love letter is not for you :-)

Instead, I'm thinking about the friend I made 20 years ago . . . when letters were still written by hand and stamps and envelopes were licked (can you believe we used to do that?) When Japan seemed to be the biggest threat to the US economy and Olympic speed skating was still held on outdoor rinks (ok, so that was a pretty random factoid to include . . . but interesting, right?)

Our first date? A sweaty concert in a vacant strip mall in Provo, Utah . . . Swim, Herschel, Swim, Skankin' Pickle, and a still relatively unknown Mighty, Mighty Bosstones. We were so cool.

A subsequent path marked with abundant twists and turns, too many relocations to count, painful "goodbyes" with just as many exciting "hellos", and an inexhaustible collection of memories, I'd say it's remarkable we didn't misplace any of our children along the way (oh yeah, except for that time at the airport when we left "Janey" at the gate . . . oops!). You have always held us together (I use the second-person singular intentionally) with faith, patience, and sheer force of will.

This is a love letter for you, Sarah. Every paragraph of this post, every post of this blog, and everything that has happened in my life for the past 20 years has your fingerprints all over it.

I love that whenever I'm at the hospital alone, complete strangers ask me how you're
doing . . . because you've gone out of your way to soothe their pain when you, in fact, were desperately in need of comfort. Without skipping a beat, you volunteered me to drive a father and son to Safeway to pick up Tylenol for their son/brother who woke up feeling rotten. They were far from home, without a car, and were planning to walk the several blocks to the store and back . . . and the only reason you knew was because you thought to ask a few simple questions . . . because you knew that they had no one . . . except the sister they had in you.

It is far too late now (2am) to still be writing, so I'm going to wholly surrender and quote Donne (I feel like a college freshman for citing one of his love poems!). This odyssey of sorts we're on with Eddie has entirely changed the way I think about the human heart . . . both its physical function and figurative representations. So perhaps that's why Donne's "The Broken Heart" came to mind, but I also admit to simply enjoying the wonderful sound of the words. Say what you will about Donne, he knew how to pull those 17th century heartstrings.

I love you.

. . . What did become
    Of my heart when I first saw thee?
I brought a heart into the room,
    But from the room I carried none with me.
If it had gone to thee, I know
Mine would have taught thine
heart to show
    More pity unto me ; but Love, alas !
    At one first blow did shiver it as glass.

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!