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.

Post Op Day 3

So Eddie is resting very quietly right now and continues to improve since his surgery on Tuesday. Each child responds very differently to a new heart based on how their previous condition affected their various systems. In Eddie's case, where his body was accustomed to relatively weak blood flow, it will take a bit of time to readjust to a strong and healthy heart.

At the moment, Eddie is on a variety of support meds and gases to help him through the transition. Nitric oxide to help open the pulmonary arteries and allow the pressures between his right and left side to equilibrate, milrinone to increase contractility in his right ventricle as well as vasodilating his blood vessels, isoproterenol to increase heart rate, dexmedetomidine to keep Eddie sedated, and a rash of other meds for pain relief.

Admittedly, we are chasing our tail a bit since each of these meds cause downstream effects . . . which then have to be mitigated by other treatments. Over the past 24 hours, however, Eddie has stabilized and seems to be in a relatively happy place. Heart rate and pressures are steady, kidney function is good, and when he's awake, Eddie is asking for water, bubbles, and Thomas (the train, of course) showing he is neurologically "appropriate" :-) Can you tell we've been in the hospital a wee bit too long?

So overall, we are very happy with Eddie's progress. We are still in shock that his heart is here and functioning.

Sarah and I are tired, but managed to get relatively good sleep the past two nights. Adrenaline can get you a long way, but taking advantage of a quiet room and a few hours of uninterrupted rest has been super important for us.

I am excited to head home this afternoon to manage the chaos that is our eight year-old's birthday party!

Our biggest hope today is that we can extubate and put some real food into Eddie's mouth. Will know more during rounds. And after that, we hope to share some more photos as Eddie improves.

Have said it many times before, but we are so thankful for the many nurses that have cared for Eddie over the past two months. The doctors often get the credit for saving lives, but Sarah and I will tell you that it is the nurses that have kept our boy strong in his worst moments. They have been by his bedside every hour of every day and, in their own special way, have contributed to his endurance, healing, and recovery. To all you nurses, you are amazing and we love you!

More soon . . .

Looking Ahead

Spent the past few hours with Eddie. He is still quite sedated and we're trying to keep him relaxed since he is very delicate after such a major surgery, but overall, he is doing great.

Medically, Eddie is strong on all counts. His new heart is being paced by an external pacemaker (common in transplant patients), since it will take some time before he can run completely unsupported. He is receiving a variety of meds to help control heart function, pain, and sedation and he will begin receiving diuretics, steroids, and immunosuppressant meds in the next day or two.

At this moment, I am thinking of a line from Jose Saramago, one of my favorite writers who passed away last year. He said: "All the scheming and plotting in the world won't result in something lasting, transcendent. Anything that's authentic, that's real, comes in the form of a gift." So appropriate on a beautiful new day for Eddie . . .

A New Day

We just finished talking to the transplant surgeon and, in short, everything went as smoothly as possible. Eddie went to the OR around 1:30am and over the next three and a half hours was put on heart/lung bypass and had his Berlin Heart "decommissioned." The heart arrived at 5am and Dr. Cohen was able to implant it, make the five connections (superior vena cava, inferior vena cava, aorta, pulmonary arteries, and coronary arteries) and close Eddie's chest is about 90 minutes.

This has been a truly miraculous night for us. We are getting ready to see Eddie right now. We love you!

Beating

We've received a few updates through the night, but just had confirmation that Eddie's new heart has been attached and is beating well. It started instantaneously which is a great sign.

The surgeons will watch for peripheral bleeding or other complications before they close his chest which should take another hour.

He's not out of the woods yet, but we are shedding tears of joy. Will share news as soon as we have it.

Another (the last) walk down the hallway . . .

Eddie went in at 1:30a. We're estimating he'll be in surgery for about six hours so we're going to try to get some sleep. We love you!

Long is the night to the watcher . . .

A proverb from Buddha and appropriate tonight. The anesthesiologist just stopped by to tell us we will be delayed by one or two more hours. I think we can handle that :-)

T-90

Still on track for 11pm. Eddie is in great spirits, singing, playing with trains, painting. Was wonderful to have the kids join us for an hour or so this evening.

Thank you for all of your love and support!

Early Afternoon Update

Looks like Eddie's surgery is being pushed back a bit so he probably won't go into the OR until around 9pm tonight. It's quite common for transplant schedules to be "fluid" since the amount of coordination among the various surgical teams makes things complicated.

Will try to get some rest to prepare for a long night . . .

A New Heart

"And the Spirit of the Lord will come upon thee, and thou shalt . . . be turned into another man.

"And it was so, that when he had turned his back to go from Samuel, God gave him another heart." (1 Sam. 10:9)

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In the Old Testament, when Saul was appointed as the first king of Israel, he was told that he would be "turned into another man" and given a new "heart" as part of that process.

Well, we don't know what amazing things Eddie will be called to in this life, but we do know that he will receive a new heart. The Transplant team called us at 7:11 this morning with the news that they had accepted a heart! Right now, the plan is to roll Eddie into the OR late this afternoon or early evening.

We have no details at this point about where the heart is coming from, etc. We will share updates as we have them.

We love you all and ask for your thoughts and prayers over the next 24 hours.