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 . . .

Saturday Snaps

Another good day with Eddie out of bed quite a bit. Still not ready to test out his legs, but happy to test drive his "cheesy" smile.

As most of you will remember, it was three weeks ago today that Eddie got out of bed the first time. Wonderful photos and lots of enthusiasm. Then Sunday happened . . . and was followed by ten excruciating days of uncertainty, three open chest surgeries, and most importantly, an amazing recovery.

Needless to say, we are cautiously optimistic about the week ahead for Eddie.

Gastronomically speaking, he's pretty attached to milk, water, and fruit roll-ups right now. The milkshakes, waffles, chocolate cake, and other "high lipid content" foods we're pushing at him get the cold shoulder. Not surprising, really, considering that he's being infused with a pretty high-calorie mystery cocktail through his NG tube. Bon appétit, Eddie.

Also some photos of our brief expedition to Seattle Center for the opening day of Next50. My Microsoft colleagues will recognize our gnomish friend making guest appearances all around the city.

And finally, April 21st can't go by without wishing our friends in the UK and Commonwealth nations felicitous birthday celebrations for the lovely Elizabeth Alexandra Mary Windsor. Happy 86th!

Day 40

Happy Tax and Titanic Day . . . a seemingly appropriate combination of ignominious events to share the same date. Regrets to any of you celebrating a birthday on April 15th . . . at least this year the IRS was generous enough to let us file through tomorrow. Calling all procrastinators . . .

Below, the first complete Harper Family photo in a long time. We took Eddie out for a stroll around the ICU again today . . . this time sitting in a wheelchair with Sarah. What you can't see are the two nurses responsible for pushing the Berlin Heart compressor (under the laptop) and the rolling "tower of medicine" that accompanies Eddie wherever he goes (strategically placed to my left off camera).

Eddie had another good day today. For the most part, his vitals and labs are stable, no real fever, bleeding seems to be under control, and two ECHOs show only very small amounts of fluid in his pericardium (so no immediate danger of repeating his tamponade episodes). For this week, we'll begin working very closely with Physical Therapy and Speech/Nutrition to get him as strong as possible in advance of transplant.

Gratifying moment . . . our transplant surgeon stopped by this morning and wanted to let us know that he didn't think he had ever seen the staff rally behind a patient the way everyone has for Eddie. It probably helps that he's so darn cute, of course, but I know it's also a function of how critically ill he has been and how strong he has fought back. To top it off, there is a whiff of miracle about this boy and it's wonderful to see how many people he has inspired over the past several weeks.

To express its gratitude, Seattle Children's began sending Eddie delicious meal trays yesterday. Menu samplings include pureed maple pancakes, pureed egg souffle, pureed potatoes, and (my favorite) pureed macaroni and cheese. And as you can tell from the photo below, the culinary staff has some wicked creativity skills since Eddie's pureed corn entrée is even molded in the shape of, yep, an ear of corn!

For those patient souls still waiting for a real Eddie smile, I hope this clip satisfies. One of our beautiful transplant friends stopped by the other day and dropped off a gift for Eddie . . . the "magic" swimming clown fish (aka Nemo). It was a huge hit and his face says it all . . . even though he's not ready to completely give up on his Thomas engines.

Have a wonderful week!

Easter Monday

Luckily for me, Easter Monday is an observed holiday in over 110 countries (and western New York . . . Happy Dyngus Day, Buffalo!) so I can still squeeze in some Easter thoughts along with an update on Eddie tonight.

We spent a lot of time talking about Eddie's fluid balance today. For cardiomyopathy patients, monitoring and controlling fluid intake and output is super important since too much fluid in the body makes it more difficult for a weak heart to pump effectively. In fact, the very first thing the cardiac ICU nurses do during rounds is to tick through the list of all positive and negative fluid flows (In: NG feeds, blood transfusions, IV medications; Out: Urine, chest tube drainage, bleeding) and then we set specific goals for what Eddie's net balance should be during the day.

When his fluid balance is too high, Eddie gets a fast-acting diuretic like Lasix. When he is dry, we may give him boluses of saline to bring him back in line. Being too wet or too dry has dramatic impact on how his Berlin pump fills and empties so we keep a very close eye on his status. Similar to how we walked the clotting/anti-coagulation tightrope last week, it is a real balancing act to ensure Eddie is in the best place possible for an eventual transplant.

So one of the reasons why the topic came up again today was related to drinking. You may remember that Eddie was drinking thickened juice last weekend before his tamponade episode pushed all oral nutrition options off the table. Now that he's in recovery, it's about time for Eddie to dip his toes in again and "fluid balance" reared it's ugly head. Because of their ongoing diuretic regimen, cardiomyopathy patients are often thirsty and Eddie is no exception. It is hard to watch him beg for something to drink and not be able to get anything in the immediate term.

Our doctors and nurses have been very flexible in letting us "bend the rules" from time to time, and I think they are doing their best to keep Eddie healthy. One of the other challenges comes in the form of his ability to swallow properly and keep oral liquids out of his windpipe. I wasn't at the hospital today for his speech therapy session, but it sounds like the results were "inconclusive" which will lead to further studies before giving him the full green light on drinking. In the meantime, they are allowing Eddie to drink small amounts of thickened liquid again which is much better than nothing.

Otherwise, today was a pretty good day. His chest output seems to be increasing, but it is still primarily serous rather than bloody. Berlin wasn't filling perfectly, but ok. Good perfusion and warm all over. Most notably, he is more animated every day and is talking more and more. We spent 15-20 minutes this morning playing with several of his puppets (including his favorite, the Chicken Beaver . . . don't ask . . .) and he was laughing freely. So good to see the smiles and hear the laughter that we love.

Turning back to Easter, forgive my personal indulgence, but I wanted to share one of my favorite devotional poems from my favorite devotional poet, George Herbert. Few people read Herbert anymore and I can understand why . . . it's religious, difficult to understand, and, well, 400 years old. However, I am always impressed by its (and his) humility. This was a man who was born into an aristocratic family, close friends with John Donne, was a favorite of King James I, and yet rejected material and secular rewards and pursued the quiet life of a parish priest and poet.

Herbert's pattern poem "Easter Wings" is remarkable not only for its novel conceit (Wow! A poem shaped like wings!), but for the way each stanza closes, managing to find not sorrow in adversity and trial, but rather enlightenment and joy ("Then shall the fall further the flight in me / Affliction shall advance the flight in me.") While I don't relish the idea of walking the difficult path ahead, I do find comfort in knowing that we'll arrive at our destination more enlightened than otherwise.



And finally, I thought I'd include a link to a sermon that has brought me great comfort since I heard it a few years ago. Jeffrey R. Holland is a former president of Brigham Young University and of the American Association of Presidents of Independent Colleges and Universities. He has received the Torch of Liberty award from the Anti-Defamation League. And he now serves as a member of the Quorum of the Twelve Apostles of the Church of Jesus Christ of Latter-day Saints.

While Elder Holland's talk clocks in at over 18 minutes (well worth the investment), I was struck by his comments that start around 12:18.

[Jesus'] solitary journey brought great company for our little version of that path—the merciful care of our Father in Heaven, the unfailing companionship of this Beloved Son, the consummate gift of the Holy Ghost, angels in heaven, family members on both sides of the veil, prophets and apostles, teachers, leaders, friends. All of these and more have been given as companions for our mortal journey because of the Atonement of Jesus Christ and the Restoration of His gospel. Trumpeted from the summit of Calvary is the truth that we will never be left alone nor unaided, even if sometimes we may feel that we are. 

As we approach this holy week—Passover Thursday with its Paschal Lamb, atoning Friday with its cross, Resurrection Sunday with its empty tomb—may we declare ourselves to be more fully disciples of the Lord Jesus Christ, not in word only and not only in the flush of comfortable times but in deed and in courage and in faith, including when the path is lonely and when our cross is difficult to bear.

Our family has passed some very difficult days and nights recently, yet never have we doubted the care of our loving friends and family. You have been saviors to us in so many ways and we feel your hands, your tears, and your words as vicarious blessings from our Exemplar par excellence. You are His hands, and we are profoundly thankful for it.