Milestones

So many updates since Eddie's transplant and no idea where to begin. The past week has been amazing for our family and we are still trying to digest everything that has happened. It's a bit of a dream, really . . . and our entire focus has been on enjoying this very special time with him. We know we'll never have another chance like it . . .

In short, Eddie is making remarkable progress. The first few days after transplantation were difficult since he was intubated, sedated, and had drainage tube-, IV-, and monitor wire- spaghetti all over his bed. Hard to lie in bed comfortably let alone getting out for a stroll.

We were able to take out his breathing tube Friday afternoon, followed by his drainage tubes and nitric oxide on Sunday. Then Monday morning, one of the transplant cardiologists wanted to see how Eddie would respond to a higher heart rate and set his pacemaker to 105 bpm as opposed to his native rate in the high 80s (he is connected to a temporary external pacemaker which we'll remove before he goes home). Almost immediately we saw a difference . . .

Since Monday, he has been talking, singing, playing, and, perhaps most surprisingly, eating. Cheetos, oyster crackers, fruit roll-ups, and cinnamon toast all get the thumbs up. Still turning up his nose to lasagna and broccoli, but we can live with that . . . our goals are modest at this stage :-)

And then the surprise today was to hear that he is ready to leave the ICU. After 66 days and too many ups and downs to count, we're taking down the decorations and packing our bags for the move tomorrow. Going to the surgical floor is a huge step for Eddie, but we won't deny that we're sorely going to miss the Cardiac ICU. They have been spectacular, heroic, and remarkably human(e) in taking care of Eddie. Rather than disassociating (as I feared at the beginning), most of the doctors and nurses invested themselves completely in Eddie's care and were noticeably affected by both his setbacks and successes.

I feel completely unable to do justice to these amazing individuals. We consider many of them to be extended family and look forward to staying in touch as Eddie grows older. What an amazing reward to see a three year-old heart failure patient grow up to be a healthy young adult, knowing all along that you were partly responsible for bringing him to that point.

Susan B. Anthony is credited with saying that "sooner or later we all discover that the important moments in life are not the advertised ones, not the birthdays, the graduations, the weddings, not the great goals achieved. The real milestones are less prepossessing. They come to the door of memory unannounced, stray dogs that amble in, sniff around a bit and simply never leave. Our lives are measured by these."

I think that's probably right. We have countless small but specific examples of doctors/nurses caring for Eddie that will bring tears to our eyes for the rest of our lives. The same goes for family, friends, and neighbors providing innumerable kind acts of service so that we wouldn't collapse under the weight and pain of Eddie's illness.

"It is not so much our friends' help that comforts us as the confident knowledge that they will come to our aid." Well said, Epicurus . . . words as appropriate today as they were 2,300 years ago.

A few photos to enjoy!

Ah, ECMO . . . we've come such a long way. You saved Eddie's life . . . but we're glad to say goodbye

The "Juice" (and Cheetos) Lady

Wonderful physical therapists

First bites . . . yum, dry toast!

Loving doctors and nurses

Birthday treats for the Cardiac ICU

The Man. Eddie's transplant surgeon. Words fail us . . .

Two of our friendly Cardiac ICU attendings

Puppet show

Final rounds in the Cardiac ICU. Hard to say goodbye. We love you.

Eddie 3, Invasive Foreign Objects 0

I forgot to mention that Eddie pulled his chest tube out last night. For those keeping track, that makes one breathing tube and two mediastinal drainage tubes.

The good news is that we were seeing only 10-20 ml of serous fluid each day and were pretty close to removing already. The incision site is hidden under his Berlin dressings so we can't access it until his next change (tomorrow). So we're hoping the biggest problem will be a round scar rather than a nicely sutured incision.

As a precaution, we ECHO'd him today and there didn't appear to be any significant pericardial fluid buildup as of yet. We'll keep an eye open, but as usual, Eddie knew what was best for him and took matters into his own hands.

Eddie's friendly Hermit Crab

On a walk to see the Hermit Crab

Through the fish tank

Fun with trains, markers, and Aunt Courtney

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

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!

Day 30

Good morning, everyone. I know many of you have been waiting patiently for an update, so here's what we know:

Yesterday's ECHO didn't show much of a change in Eddie's clots . . . still roughly the same size and in roughly the same place. This is good since we know they are still in his heart and haven't migrated somewhere more dangerous. Also, since clots tend to establish themselves more firmly over time, there is the possibility they will become more embedded and less mobile which, in the near term, may be a good thing since they don't seem to be obstructing blood flow through his heart. We will continue to monitor his clots through daily ECHOs.

We scheduled a care conference yesterday afternoon with Eddie's doctors to understand where things stood and get a comprehensive picture of his care options going forward. The net result was that we felt it best to take a watch-and-wait approach rather than take any interventional steps (surgery, specialized anti-clotting drugs). With constant monitoring and a bit of finger crossing, we would hope for the best.

Not long after the care conference, however, the team approached us and said they needed to take Eddie back to the operating room since the bleeding from his chest tube was increasing and was increasingly bloody. After much discussion with colleagues around the world, the doctors and surgeons felt it was getting to the point that we had to take the risks of surgery to identify the source of bleeding and try to stop it. This was around 6:00p last night.

About three hours later, we received word that Eddie was stable and recovering nicely. They had found one artery that was bleeding a bit, but mostly there was diffused and general bleeding and it was difficult to pinpoint the source. They closed him back up with the hope that the bleeding would slow down, but there was no smoking gun.

As of this morning, he is still intubated (on the ventilator with breathing tube) and he is still bleeding. He is awake and responding to us and we are so grateful to have him with us. We will have a more detailed discussion with the doctors in the next hour and will share news as we have it.

As you can tell, Eddie is very critical. We love him, and are so proud of his strength . . . he inspires us every day with his tenacity. Thank you for your prayers . . . we feel them every day.