Downs and Ups

We figured the smooth sailing wouldn't last forever, but we weren't expecting this. Earlier today, Eddie started showing mild neurological changes (stopped playing, slurred speech, abnormal sleepiness, difficulty moving his left arm) and after observation, the doctors think Eddie probably suffered a mild stroke. The major risk of being on a Berlin Heart has always been clotting and stroke, and since we've intentionally kept his Heparin levels low, there may have been some clotting happening in the unobservable part of his circuit. (For those of you unfamiliar with the Berlin Heart, probably best to read my earlier posts here or here or Bing it.)

He was immediately taken for a CT scan to determine if there was any bleeding or swelling which, thankfully, there wasn't. An MRI would be able to tell us much more about his condition but, of course, since a filing cabinet-sized air compressor is keeping him alive, MRIs are not in Eddie's future. So we'll run him through another CT scan tomorrow morning which will allow us to compare images from both days . . . it was simply too early this morning to see any impact.

So the good news . . . is that Eddie has made rapid improvement throughout the day. By the time I left the hospital in the mid-afternoon, Eddie was moving all of him limbs, verbalizing, and generally acknowledging that he was understanding what we were saying. He even managed a couple crooked smiles, asked for water, and then requested yet another showing of The Polar Express (a sure sign he is on the road to recovery).

When I checked in with Sarah this evening, not only had he continued to strengthen physically, but he also managed to pass the swallow test (yes, the dreaded swallow test again) and even go for a stroll in his wheelchair around the ICU. As you can see from the wonderful photos below, he looks great and we are so amazed at his resiliency and strength.

Please also take notice of the amazing transformation of the Berlin Heart compressor from a cold, stolid (yet efficient) pumping machine to a much kinder, gentler Thomas the Tank Engine. A huge tip of the hat to the wonderful Child Life program at Seattle Childrens and, more specifically, to the those that have bent over backward to bring a smile to Eddie's face. Not only are they responsible for the large Thomas the Tank Engine poster in his room (made by hand with magic markers . . . THOUSANDS of individual strokes . . . truly impressive) and the Berlin compressor conversion, but also for bringing beautiful dogs to his bedside to give his hands a wonderfully soft resting place. We can't rave enough.

So here we are again, traveling down a road we never expected, but gaining strength all along the way. We're tired, but know that Eddie is in good hands . . . and not just those of his nurses and doctors :-)

We hope to have a less complicated update in the morning. We love you all!

The Artists

Berlin Heart Transformed

The Train Embarks

Speaks for Itself

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.