Our New Normal and Homecoming Thanks

As I read through our earlier posts, it seems strange to be sitting comfortably on our living room couch with Eddie playing on the floor. No sounding alarms, pump changes, IV flushes, or late night drama involving tubes of any kind :-) He is talkative and definitely much larger than ever thanks to consistent overnight feedings and steroids. But most importantly, he seems so happy to be home with his brothers and sisters . . . it is wonderful to have him here.

Eddie is definitely still a child of the hospital with a feeding tube in place and a device called a wound vacuum attached to the largest of his healing Berlin Heart incisions. He receives 13 different medications throughout the day which must be administered at 7:00a, 8:00a, noon, 4:00p, 7:00p, 8:00p, and midnight. Sarah and I also give twice-a-day injections for anti-coagulation therapy . . . no, we haven't left coag levels behind just yet.

So yes, I think it's safe to say we're tired. As we adjust to our "new normal", we are developing some strategies to make things a bit easier on ourselves and Eddie, but I doubt the next few months will ever seem comfortable. Our hats are off to the many of you that have ever taken care of a family member with short- or long-term care needs. You are our heroes (and be warned . . . we may reach out for advice!)

We are so grateful to our many wonderful Duvall friends and neighbors that made Eddie's homecoming unforgettable. Driving into town from the south, we were met with beautiful green ribbons tied to dozens of trees, the Duvall town sign at Big Rock, and light posts along Main Street. Approaching our neighborhood, green ribbons and streamers were blowing for Eddie and he was so excited to know this was all for him and his beautiful donor. What a gift for all of us!

Now, as we drive through town and see new bows, ribbons, streamers, or anything else that looks celebratory, Eddie says "For me!" and I believe he genuinely feels loved. And as if it wasn't enough to see the green ribbons on the street and to see the large "Welcome Home" sign on our garage, Eddie was treated to a King County Fire Department welcome from many of his first responders. It was great to see the smiles on their faces knowing that Eddie was home safely. Thanks for being so prepared and responsive every time we've had to call 911 . . . you were at our door in minutes when every minute counted. We love you!

Will write more later about our Friday clinic visit. Everything went smoothly, but we did have a very memorable visit with an old friend of Eddie's.

Thank You, KCFD 45!

Photos courtesy Jen Laturner. Thanks!

Eddie Has Left the Building

We just left the hospital and hope to be home by 6:45pm.

Homecoming

We're not sure exactly when Eddie will be discharged this afternoon, but we hear there may be some "excitement" in our cul-de-sac this evening. We'll post an ETA as soon as we have it since we wouldn't say no to anyone that wanted to be there to welcome Eddie home.

One Door Closes As Another Opens

Very difficult to believe our stay at Seattle Children's is coming to an end. Today was really quite hectic and emotionally draining as we started our "prove-to-the-hospital-staff-we-can-take-care-of-Eddie-at-home" routine . . . basically doing vitals, drawing and administering all 12 meds, dropping an NG tube into Eddie's stomach, learning how to run his overnight feeds, and managing his wound care. It's one thing to do this in the hospital where nurses and doctors kindly (but firmly) correct us, but quite another when we're back home trying to figure things out for ourselves. Are we ready for this?

In spite of the fear and worry, it was a beautiful day as so many of our wonderful SCH friends stopped by to say goodbye to Eddie. It is hard for us to imagine, but most of our doctors and nurses had never really seen the Eddie we know. When he rolled into the ICU, he was virtually unresponsive on ECMO and it has only been in the past 1-2 weeks that he has really been his more playful self. Few people expected to see him this way.

We're excited to see our wonderful Duvall friends and neighbors again . . . as full-time rather than part-time residents. When we made the decision to settle in Duvall from out of state five years ago, we had no idea how important that choice would be. We will slowly but surely find our own way to thank you for your love and kindness.

We expect to be discharged tomorrow afternoon, anxious to see what is waiting for us as we turn yet another page in this saga. We love you all!

Homecoming ETA Wednesday

All in the Family

Eddie is getting stronger every day and we are so amazed by his will to recover. He is still a bit week physically because he hasn't walked since the first week of March, but he is talking, playing, and singing like a three year-old should. It's no surprise that he's charming the floor nurses just like he did in the ICU!

Overall, since he is making such good progress, our focus has turned to education and how to keep Eddie healthy once he comes home. Sarah and I meet with the transplant coordinators and transplant pharmacists almost every day to learn about and begin adjusting to life as a transplant family . . . so daunting. The medications, the lab draws, clinic visits, ECHOs, biopsies. The constant vigilance for symptoms of rejection, daily vital signs, educating friends and neighbors about his condition, and, most of all, doing what we can to help Eddie feel he is normal and can live a rich and full life.

Thanks for everyone's continued kindnesses and well wishes over the past two weeks, even though our updates have been less frequent. We know so many people are interested in and inspired by Eddie's progress. He is a remarkable boy and will grow up with so much gratitude for the love he receives from each of you.

On a seemingly unrelated topic . . .

One of the best undergraduate courses I took at BYU was Larry Wimmer's American Economic History, aka Econ 274 :-). Rather than walking through dry series of lectures on the Industrial Revolution, Reconstruction, or the Great Depression, Dr. Wimmer asked us to use our own family history whenever possible to document our ancestors' experiences and make 19th- and 20th-century American history that much more relevant and exciting.

For example, simply by using publicly available US census data, I was able to study immigration/emigration patterns for several branches of my family, infant and adult mortality rates, occupation trends, economic conditions, slave ownership, and literacy patterns. It was a fascinating way to study our family's history and understand how our ancestors shaped and, in turn, were shaped by American history.

So why do I mention this in Eddie's blog? Well, family history has been on my mind again as we've been talking to the Seattle Children's genetics staff about the possibility of inherited elements of Eddie's heart disease. Certain cardiomyopathies have strong genetic components and often are found in generation after generation of the same family. Other cardiomyopathies, such as Eddie's restrictive diagnosis, very rarely occur in families and root causes are often never discovered.

Several weeks ago, as part of Eddie's treatment, we sent blood samples to Harvard for genetic testing. Since the doctors had no specific idea of what they were looking for, all 46 of Eddie's chromosomes were analyzed for mutations and/or abnormalities. Based on the initial results, the Harvard lab believes they have isolated one genetic mutation that is (was) most likely responsible for Eddie's restrictive cardiomyopathy.

Personally, I was surprised by the results. We had done some very high level scanning of our family tree looking for unexplained deaths at an early age, chronic heart disease, etc. but nothing jumped off the page. After talking to the genetic counselor, however, I've been taking a closer look at my family history and am finding fascinating stories. Thanks to the miracle of the internet, Utah's well-organized death certificate archive, and the LDS Church's unfailing commitment to cataloging and making available historical records as fast as they can scan them, I was able to find detailed death certificates for 36 members of my maternal line in less than three hours. Totally fascinating.

Even more fascinating when you see something like the following death certificate for my great-grandmother's sister. She was only 26 when she died of unknown causes, "sudden but natural." As mentioned previously, one of the hallmarks of cardiomyopathies is their tendency to appear suddenly and without warning. Other common cardiac causes of death I've uncovered include myocarditis, coronary thrombosis, and coronary occlusion, several of which occurred at earlier-than-normal ages.

So not surprisingly, Sarah and I will be tested soon for the same mutation we found in Eddie. We're just learning about the genetic elements of this puzzle so really have no idea about what next steps would look like if we test positive other than probably testing the kids and the potential for increased cardiological monitoring over time.

More details as we have them . . .

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.

Happy Birthday, John...another love letter

First, Eddie.  He slept all night long.  He is sitting up, playing with his trains, talking up a storm.  We look forward to a great day.

Now the short love letter.   It's John's birthday. I love my husband.  John, you have been our stable support throughout this odyssey.  Your ability to process the information coming at us nonstop and help us all understand it has made everything seem just a little more manageable. Thank you for setting aside your work, your sleep, really everything, to see us through.

I love you, John.  Thank 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 . . .

Apologies

Sorry for the long delay between posts. Has been a whirlwind couple of days. Eddie is doing well and I will post a more detailed update in the next couple hours.

Oh, and congratulations to Kelsey and Daniel. I can't believe the beautiful first daughter of my beautiful big sister is married! We wish we could have been there. All the best!

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!

Late night

We've now been pushed to 11pm . . . and supposedly that's final.

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 . . .

Facebook and Organ Donation

Can't deny I love Mark Zuckerberg for doing this . . . may become a fan yet!

http://www.pcworld.com/article/254771/facebook_wants_you_to_donate_your_organs.html

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.