Enter Neurology

As if we didn't have enough specialists involved in Eddie's care already, we've now invited the neurology team to join in the fun! The crew (six or seven members strong) came by after Eddie's early morning CT scan to share their findings.

They believe that this was definitely a stroke as opposed to a TIA, or transient ischemic attack. Those TIA "mini-strokes" typically last only a matter of minutes, cause no permanent damage, and usually leave little trace in the brain itself. In Eddie's case, the neurologists were able to see clear signs of a stroke in Eddie's brain scans, but the damage was isolated to a very small part of the thalamus. The CT imagery and Eddie's clinical presentation both point to an embolic stroke, most likely caused by a clot from one of the non-visible sections of the Berlin Heart circuit.

Since Eddie has recovered almost all of his speech and motor function, we are confident the worst is over . . . for this particular event. Our biggest risk now is that additional clots form in the circuit and hit the brain again. Where there's smoke, there's fire . . . if one clot was able to form, it is more than likely that others will, too.

I know I sound like a broken record at this point, but the only way we can really address the clotting concern is by increasing his Heparin levels . . . which we have done significantly since yesterday morning. We have turned up his Heparin by 50% in the last 24 hours with, thankfully, no evident bleeding from his chest tube. His pressure levels, perfusion, and skin color are very good (these were all previous indicators of fluid buildup in his heart), so we don't think there is any bleeding in the pericardium. And since the part of the brain affected is so small, neurology believes the risk of cerebral hemorrhage is very low.

We'll see how he does overnight and the ICU attendings will pow-wow tomorrow to determine if Eddie will need anti-platelet therapy, as well. Antiplatelets are a group of medicines that stop blood cells (called platelets) from sticking together and forming a blood clot. This kind of treatment has been exactly what we have been avoiding for so long, but we think we may be starting a new stage in Eddie's care which requires new methodologies.

We also wanted to say that we are very disappointed not to respond to all of your comments and wonderfully kind words. We read every note (handwritten or posted online) and find great comfort in them all. They encourage us to continue fighting and comfort us in those dark hours when things seem to be going in the wrong direction. Thank you.

Working on his gross and fine motor skills . . . at least that's what physical therapy tells us :-)

Finding a few minutes to celebrate our April birthdays at Menchie's along with the aunties!

Meeting a new friend - Paddy

Steady Eddie

It's hard to believe, but it has now been two weeks since Eddie's last open chest surgery. Since then, he has done remarkably well and we're keeping our fingers crossed that momentum keeps him going in the right direction.

We continue to have a bit of excitement with Eddie's anti-coagulant levels. Yesterday, the doctors decided to trial him by increasing his Heparin slightly to see how he would respond. Not surprisingly, even though the change was quite small, Eddie's chest drainage turned red within an hour and we had to put him back to his original levels.

At this stage, I think everyone is finally in agreement that we should just hold the course and only make changes when clinical evidence indicates a change is needed . . . in other words, if it ain't broke, don't fix it!

Eddie has made a few exciting field trips over the past few days, including soaking up some sun on the 4th floor patio yesterday. As you can see from some of the photos below, it takes quite an entourage to make these walkabouts happen, but it's so worth it.

For your viewing pleasure, I've attached some photos from the past several days. As you'll see, some have captions while others need no additional explanation. Enjoy!

A somber Eddie waiting for his field trip to see the fish

Entourage

Dwarfed by the Octopus



Eddie has left the building

Enjoying the afternoon sunshine (Well, at least Sarah and I did)

A visit from Ms. Huber, one of our wonderful town librarians!

The Harper boys

A visit from Lee Roy, Eddie's favorite therapy dog

Friday Snapshots

Yesterday was a good day on many fronts. Eddie went to the Fluoroscopy lab early in the morning and passed his liquid swallow test with flying colors. He also managed to down a couple Doritos with a delicious barium dip concoction . . . apparently they've taken my menu advice to heart :-)

The picture below is Eddie sitting in the fluoroscope waiting for his test to begin. Pretty amazing piece of equipment and surprisingly delivers relatively low doses of radiation. Unfortunately I don't have the video images right now, but the hospital has been kind enough to burn a DVD so we can snuggle up on the couch with a bowl of popcorn and presto . . . movie night!

The net result of his fluoroscopy is that he can drink anything without restriction and he is also clear to eat purees (apple sauce, yogurt, pudding). We'll wait until next week to start solids as the Speech team will work more directly with Eddie at the bedside. All in all, great news! And not surprisingly, in addition to several ounces of apple juice, Eddie went straight for the cherry popsicle.

Eddie also managed to go on a field trip around the ICU in his new personal trolley. Other than heading to the OR or cath lab (not happy memories), this was his first trip outside his hospital room in over five weeks. It was great to see the nurses and doctors cheering for him as he made his journey. We hope to get out again today . . . maybe in a wheelchair this time.

Overall, Eddie has had a couple good days in a row. We are still playing around with his Heparin a lot due to changing lab results and chest output. As of now, his chest tube is putting out mainly serous fluid, but it definitely has been turning pink over the past 24 hours. This follows exactly the same pattern as previously when we had to send him back to the OR, but we are being more interventionist with our Heparin doses. We're crossing our fingers that we can keep his bleeding under control while avoiding any clots in his pump. The small speck of fibrin buildup from Thursday disappeared yesterday morning with no ill effect.

And as proof that Eddie does watch something other than Polar Express, here he is watching (surprise of surprises) . . . Percy's Chocolate Crunch. Sense a theme?

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.

He's Back

Another day, another open chest surgery. In case you've lost count, this is number four in three weeks (and number three in the past week). He came back after a couple hours and is stable...intubated...sedated...and not bleeding.

Starting tomorrow, we'll need to restrategize and it will probably involve not running Heparin and monitoring his Berlin Heart extremely closely for clots. Changing out a pump from time to time is preferable to cracking Eddie's chest over and over again.

We're all very tired but grateful he's back in our hands.