28 April 2012

No Surprise

Well, not surprisingly, Eddie did awesome and he is enjoying his 3rd Berlin pump and a cold cup of milk. Procedure went as smoothly as it could. The doctors were worried beforehand about the potential for fracturing the cannulae since this is the second change and the tubes can only take so much tightening before they crack. However, the tubes are holding up very well and no post-op concerns.

Eddie will now begin antiplatelet therapy so we'll probably be talking about dipryidamole, or Persantine (brand name) in the coming days much like we've been talking about Heparin.

Eddie's old pump will now be used for training purposes here at the hospital. Previously, all pumps were returned to the Berlin Heart company, but now that the clinical trials are over, we can keep the pumps and use them how we see fit. Way to contribute to science, Eddie!


Just kicked me out of the room (10:58) as they'll be setting up a sterile environment before they put Eddie under. We expect Eddie will be clamped off for only 2-3 minutes, but with all the prep and dressing changes, it will probably be 60-90 minutes before everything is done.

Keep fighting, Eddie!

Pump #3

It appears likely that Eddie will need yet another Berlin pump since the fibrin deposits have grown larger and they appear to be darkening. We've sent photos to the Berlin Heart folks to get their assessment, but there is little doubt we'll need to move forward with a pump change.

Similar to last time, Eddie will be intubated and anesthetized during the entire procedure. Unlike his previous episode, however, the doctors are comfortable doing the change at bedside rather than taking him to the OR.

For those that weren't following the blog back in late March, you can read about Eddie's first pump change here and here. We hope everything goes as smoothly this time as well.

If everything goes as planned, we'll start the procedure around 11am PDT. Will send any updates prior and will definitely post a follow-up status after we're done.

Adding image of the developing clot so you can visualize what we're talking about.

27 April 2012

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

26 April 2012

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

24 April 2012

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

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