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It was a year ago yesterday that we were adopted into the Seattle Children's Hospital Cardiology family. On Tuesday, January 24, 2012, we still thought Eddie's condition would be diagnosed by a neurologist rather than a cardiologist, so we walked through the 4th Floor Whale entrance more nervous about Eddie's sleep study scheduled for the next day than his echocardiogram.

Today, we are thankful for Dr. McQuinn, the face we'll always associate with Eddie's diagnosis . . . and we love you for it. You spoke to us kindly, gently, but directly. The 'T' word escaped from your lips only minutes after seeing Eddie's ultrasound . . . which we know must have been tremendously difficult for you. You left the door open a few millimeters for us . . . perhaps the imaging was misleading, you would need to consult with your colleagues before making any formal conclusions.

Why don't you get some lunch, and I'll talk to the Transplant Cardiology team to get their opinion.

Should we schedule another appointment to get your feedback? How long will it take you to get an answer?

Oh . . . no. We'll need to talk this afternoon. Don't go far. We'll give you a pager. And so it began.

We're thinking of you Drs. Kemna and Albers, our first transplant cardiologists, who sat with us that afternoon, speaking to us more with your eyes than with your lips. Will this family make it through the coming months? Do they have any idea what stress, what heartbreak, what pain they will face? I don't know but they were also asking themselves if they were ready to escort another child through months of waiting, fear, and anxiety. Dr. Kemna, do you ever wonder, at moments like these, whether you chose the right profession? Dr. Albers, are you sure you're prepared for a lifetime of broken hearts?

Well, John Donne said "Affliction is a treasure, and scarce any man hath enough of it." I don't know if that gives you any comfort, but it does me. While Proust, a bit more recently, told us that "we are healed of a suffering only by experiencing it in full." I don't know if we've drained our pool of suffering yet, but we have certainly felt a blessed measure of healing at your hands. Do not doubt, as I'm sure you don't, the path you have followed . . . Eddie knows you as angels, and we will always remember that day, in 2012, when your eyes spoke more eloquently than your lips.

More Anniversary Thoughts and Current Events

So we passed an amazingly poignant anniversary mark yesterday . . . Eddie collapsed Sunday night, January 8^th, last year. It’s frightening, sobering, and exhilarating to think back to that point and impossible to believe how much our life has changed in between. A bit eerie today as I was scrolling through some of my work emails and found the following to my manager which could compete for understatement of the year:

"FYI, Sarah and I had a scare last night as Eddie, our 3 year old, lost consciousness, stopped breathing, and we couldn't detect a heartbeat. Doctors think it may have been a seizure of some sort, but still need to run more tests...after the battery of CT, EKG, and blood test they ran last night.

"He came home with us in the middle of the night...after he had recovered and after tests they said there was nothing specific they could do if they admitted him. But we have to go back today and will probably need to talk to a neurologist.

"Bottom line, he's ok now, but I may be AWOL for a couple hours this morning as Sarah and I work out next steps."

Two things have been on my mind as we hit the one-year mark. First, everyone should seek out CPR training of some sort . . . even if just watching a few YouTube videos. Eddie suffered what is known as an Aborted Sudden Cardiac Death . . . aborted because we immediately went to work on him with chest compressions. He had no pulse and wasn’t breathing, and while I had never actually administered CPR, I had participated in several training sessions of one sort or another.

According to the American Heart Association, administering CPR immediately after onset of cardiac arrest can increase survival rates by 3x. Unfortunately, only 32% of cardiac arrest victims receive CPR and, even more sadly, only 8% of people who suffer cardiac arrest outside of a hospital survive. And if that isn’t enough reason to learn CPR, then consider the fact that four out of five cardiac arrest episodes occur at home . . . so the life you save will most likely be a child, spouse, parent, or friend.

On a related note, we’ve obviously thought a lot about potential opportunities to help drive awareness of Eddie’s medical condition, organ donation, patient advocacy, etc. If we’re going to be asked to pass through this kind of trial, it would be a shame not to do everything possible to help lighten the burden for others currently struggling through similar circumstances . . . or, looking forward, participate in efforts to minimize the suffering of future generations.

Well, for the past month-and-a-half, our high school freshman has been working twice a week at the University of Washington Medical Center Laboratory in Seattle. He has generously been allowed to participate in important stem cell studies at one of the most highly regarded regenerative medicine labs in the world. His sponsor, Dr. Charles Murry, is a leading researcher in the stem cell biology and regenerative medicine . . . basically looking for a way of helping the heart heal itself which would eventually make surgery and transplantation unnecessary.

If you’re interested in finding out more, your best bet is to ask him directly since Sarah and I are absolutely out of our depth. Have attached a few photos and video of the cells he has been feeding and growing in the lab . . . can you believe this? Yes, these cells are beating! They began life as fetal lung cells and have since been reprogrammed and are now functioning cardiomyocytes, or heart cells.

 

Continued thanks to all for thoughts, prayers, and kind words. The magnitude of what has happened to our family still hasn’t sunk in, but there are moments when I watch Eddie sleeping peacefully, or when he dances around the room with the other kids, or sleds down the hill with Sarah, that I honestly feel like I’d go through it all over again . . .

Anniversaries

It's been almost a year since this Odyssey began. I am going to bed tonight (the day of the week Eddie collapsed) feeling so grateful, and so happy to have Eddie sleeping soundly down the hall. He is more and more a normal four year old every day, even has started doing flips over the furniture and running into parking lots. We are starting to get our family's life into a more sustainable routine. Even though most of what we all do each day is informed by having Eddie as a part of our family, I think we feel we can breathe a little easier now.

A new look for a new year
(trying on glasses for fun while Mom chose hers)