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

No Surprise

Well, not surprisingly, Eddie did awesome and he is enjoying his 3rd Berlin pump and a cold cup of milk. Procedure went as smoothly as it could. The doctors were worried beforehand about the potential for fracturing the cannulae since this is the second change and the tubes can only take so much tightening before they crack. However, the tubes are holding up very well and no post-op concerns.

Eddie will now begin antiplatelet therapy so we'll probably be talking about dipryidamole, or Persantine (brand name) in the coming days much like we've been talking about Heparin.

Eddie's old pump will now be used for training purposes here at the hospital. Previously, all pumps were returned to the Berlin Heart company, but now that the clinical trials are over, we can keep the pumps and use them how we see fit. Way to contribute to science, Eddie!

Sterile

Just kicked me out of the room (10:58) as they'll be setting up a sterile environment before they put Eddie under. We expect Eddie will be clamped off for only 2-3 minutes, but with all the prep and dressing changes, it will probably be 60-90 minutes before everything is done.

Keep fighting, Eddie!

Pump #3

It appears likely that Eddie will need yet another Berlin pump since the fibrin deposits have grown larger and they appear to be darkening. We've sent photos to the Berlin Heart folks to get their assessment, but there is little doubt we'll need to move forward with a pump change.

Similar to last time, Eddie will be intubated and anesthetized during the entire procedure. Unlike his previous episode, however, the doctors are comfortable doing the change at bedside rather than taking him to the OR.

For those that weren't following the blog back in late March, you can read about Eddie's first pump change here and here. We hope everything goes as smoothly this time as well.

If everything goes as planned, we'll start the procedure around 11am PDT. Will send any updates prior and will definitely post a follow-up status after we're done.

Adding image of the developing clot so you can visualize what we're talking about.

Enter Neurology

As if we didn't have enough specialists involved in Eddie's care already, we've now invited the neurology team to join in the fun! The crew (six or seven members strong) came by after Eddie's early morning CT scan to share their findings.

They believe that this was definitely a stroke as opposed to a TIA, or transient ischemic attack. Those TIA "mini-strokes" typically last only a matter of minutes, cause no permanent damage, and usually leave little trace in the brain itself. In Eddie's case, the neurologists were able to see clear signs of a stroke in Eddie's brain scans, but the damage was isolated to a very small part of the thalamus. The CT imagery and Eddie's clinical presentation both point to an embolic stroke, most likely caused by a clot from one of the non-visible sections of the Berlin Heart circuit.

Since Eddie has recovered almost all of his speech and motor function, we are confident the worst is over . . . for this particular event. Our biggest risk now is that additional clots form in the circuit and hit the brain again. Where there's smoke, there's fire . . . if one clot was able to form, it is more than likely that others will, too.

I know I sound like a broken record at this point, but the only way we can really address the clotting concern is by increasing his Heparin levels . . . which we have done significantly since yesterday morning. We have turned up his Heparin by 50% in the last 24 hours with, thankfully, no evident bleeding from his chest tube. His pressure levels, perfusion, and skin color are very good (these were all previous indicators of fluid buildup in his heart), so we don't think there is any bleeding in the pericardium. And since the part of the brain affected is so small, neurology believes the risk of cerebral hemorrhage is very low.

We'll see how he does overnight and the ICU attendings will pow-wow tomorrow to determine if Eddie will need anti-platelet therapy, as well. Antiplatelets are a group of medicines that stop blood cells (called platelets) from sticking together and forming a blood clot. This kind of treatment has been exactly what we have been avoiding for so long, but we think we may be starting a new stage in Eddie's care which requires new methodologies.

We also wanted to say that we are very disappointed not to respond to all of your comments and wonderfully kind words. We read every note (handwritten or posted online) and find great comfort in them all. They encourage us to continue fighting and comfort us in those dark hours when things seem to be going in the wrong direction. Thank you.

Working on his gross and fine motor skills . . . at least that's what physical therapy tells us :-)

Finding a few minutes to celebrate our April birthdays at Menchie's along with the aunties!

Meeting a new friend - Paddy

Downs and Ups

We figured the smooth sailing wouldn't last forever, but we weren't expecting this. Earlier today, Eddie started showing mild neurological changes (stopped playing, slurred speech, abnormal sleepiness, difficulty moving his left arm) and after observation, the doctors think Eddie probably suffered a mild stroke. The major risk of being on a Berlin Heart has always been clotting and stroke, and since we've intentionally kept his Heparin levels low, there may have been some clotting happening in the unobservable part of his circuit. (For those of you unfamiliar with the Berlin Heart, probably best to read my earlier posts here or here or Bing it.)

He was immediately taken for a CT scan to determine if there was any bleeding or swelling which, thankfully, there wasn't. An MRI would be able to tell us much more about his condition but, of course, since a filing cabinet-sized air compressor is keeping him alive, MRIs are not in Eddie's future. So we'll run him through another CT scan tomorrow morning which will allow us to compare images from both days . . . it was simply too early this morning to see any impact.

So the good news . . . is that Eddie has made rapid improvement throughout the day. By the time I left the hospital in the mid-afternoon, Eddie was moving all of him limbs, verbalizing, and generally acknowledging that he was understanding what we were saying. He even managed a couple crooked smiles, asked for water, and then requested yet another showing of The Polar Express (a sure sign he is on the road to recovery).

When I checked in with Sarah this evening, not only had he continued to strengthen physically, but he also managed to pass the swallow test (yes, the dreaded swallow test again) and even go for a stroll in his wheelchair around the ICU. As you can see from the wonderful photos below, he looks great and we are so amazed at his resiliency and strength.

Please also take notice of the amazing transformation of the Berlin Heart compressor from a cold, stolid (yet efficient) pumping machine to a much kinder, gentler Thomas the Tank Engine. A huge tip of the hat to the wonderful Child Life program at Seattle Childrens and, more specifically, to the those that have bent over backward to bring a smile to Eddie's face. Not only are they responsible for the large Thomas the Tank Engine poster in his room (made by hand with magic markers . . . THOUSANDS of individual strokes . . . truly impressive) and the Berlin compressor conversion, but also for bringing beautiful dogs to his bedside to give his hands a wonderfully soft resting place. We can't rave enough.

So here we are again, traveling down a road we never expected, but gaining strength all along the way. We're tired, but know that Eddie is in good hands . . . and not just those of his nurses and doctors :-)

We hope to have a less complicated update in the morning. We love you all!

The Artists

Berlin Heart Transformed

The Train Embarks

Speaks for Itself

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

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!

Donate Life

April is National Donate Life Month in the United States and we encourage everyone to visit the DonateLife website and read some of the amazing stories of people who have turned tragedy to hope.

While many countries practice an "opt-out" organ donation model, the US requires that citizens "opt-in" individually as donors. Sadly, while the vast majority of Americans support the idea of organ donation, many simply don't get around to documenting their choice proactively before tragedy strikes.

We know that Eddie's future depends on another family's selfless donor decision. To research organ donation and officially register you and your children as organ donors, follow the link on the Donate Life America website, or directly here.

Thanks!

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!

A Love Letter

This is not a love letter for Eddie although I certainly do love him. He's an amazing boy and continues to surprise us each day with new feats of skill. Today, it was eating pretzels and Ritz crackers and knocking the socks off the speech therapist, learning to growl like a dog when he can't stand the pain of his dressing change anymore, and preparing for a career on the DJ circuit with his toy truck which plays an interminable loop of "Funky Town" . . . seriously . . . watch the clip and be amazed.

This is also not a love letter to my other four amazing, wonderful, handsome/beautiful children . . . who have held together miraculously well while their parents have been MIA for the past six weeks. Seeing their little brother hooked up to a plethora of machines, tubes, catheters, pumps, and wires is hard, and yet they are all smiles when they are with him. And in the middle of all this commotion and uncertainty, they are rock solid. After years of being a providing parent, feeling that emotional and spiritual sustenance was going only in one direction (host to parasite?), I marvel at how much the tables have been turned. You, my infuriatingly wonderful children, are northing short of miraculous . . .

Nor is this a love letter to countless family members, friends, and co-workers who have visited us in the hospital, brought gifts, cared for our children, cleaned our house, cooked and delivered meals, colored pictures, recorded songs, prayed and fasted for us, or in some cases, gave us space to breathe, contemplate, cry, and regroup. No, this love letter is not for you :-)

Instead, I'm thinking about the friend I made 20 years ago . . . when letters were still written by hand and stamps and envelopes were licked (can you believe we used to do that?) When Japan seemed to be the biggest threat to the US economy and Olympic speed skating was still held on outdoor rinks (ok, so that was a pretty random factoid to include . . . but interesting, right?)

Our first date? A sweaty concert in a vacant strip mall in Provo, Utah . . . Swim, Herschel, Swim, Skankin' Pickle, and a still relatively unknown Mighty, Mighty Bosstones. We were so cool.

A subsequent path marked with abundant twists and turns, too many relocations to count, painful "goodbyes" with just as many exciting "hellos", and an inexhaustible collection of memories, I'd say it's remarkable we didn't misplace any of our children along the way (oh yeah, except for that time at the airport when we left "Janey" at the gate . . . oops!). You have always held us together (I use the second-person singular intentionally) with faith, patience, and sheer force of will.

This is a love letter for you, Sarah. Every paragraph of this post, every post of this blog, and everything that has happened in my life for the past 20 years has your fingerprints all over it.

I love that whenever I'm at the hospital alone, complete strangers ask me how you're

doing . . . because you've gone out of your way to soothe their pain when you, in fact, were desperately in need of comfort. Without skipping a beat, you volunteered me to drive a father and son to Safeway to pick up Tylenol for their son/brother who woke up feeling rotten. They were far from home, without a car, and were planning to walk the several blocks to the store and back . . . and the only reason you knew was because you thought to ask a few simple questions . . . because you knew that they had no one . . . except the sister they had in you.

It is far too late now (2am) to still be writing, so I'm going to wholly surrender and quote Donne (I feel like a college freshman for citing one of his love poems!). This odyssey of sorts we're on with Eddie has entirely changed the way I think about the human heart . . . both its physical function and figurative representations. So perhaps that's why Donne's "The Broken Heart" came to mind, but I also admit to simply enjoying the wonderful sound of the words. Say what you will about Donne, he knew how to pull those 17th century heartstrings.

I love you.

. . . What did become
    Of my heart when I first saw thee?
I brought a heart into the room,
    But from the room I carried none with me.
If it had gone to thee, I know
Mine would have taught thine heart to show
    More pity unto me ; but Love, alas !
    At one first blow did shiver it as glass.

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!

Friday Snapshots

Yesterday was a good day on many fronts. Eddie went to the Fluoroscopy lab early in the morning and passed his liquid swallow test with flying colors. He also managed to down a couple Doritos with a delicious barium dip concoction . . . apparently they've taken my menu advice to heart :-)

The picture below is Eddie sitting in the fluoroscope waiting for his test to begin. Pretty amazing piece of equipment and surprisingly delivers relatively low doses of radiation. Unfortunately I don't have the video images right now, but the hospital has been kind enough to burn a DVD so we can snuggle up on the couch with a bowl of popcorn and presto . . . movie night!

The net result of his fluoroscopy is that he can drink anything without restriction and he is also clear to eat purees (apple sauce, yogurt, pudding). We'll wait until next week to start solids as the Speech team will work more directly with Eddie at the bedside. All in all, great news! And not surprisingly, in addition to several ounces of apple juice, Eddie went straight for the cherry popsicle.

Eddie also managed to go on a field trip around the ICU in his new personal trolley. Other than heading to the OR or cath lab (not happy memories), this was his first trip outside his hospital room in over five weeks. It was great to see the nurses and doctors cheering for him as he made his journey. We hope to get out again today . . . maybe in a wheelchair this time.

Overall, Eddie has had a couple good days in a row. We are still playing around with his Heparin a lot due to changing lab results and chest output. As of now, his chest tube is putting out mainly serous fluid, but it definitely has been turning pink over the past 24 hours. This follows exactly the same pattern as previously when we had to send him back to the OR, but we are being more interventionist with our Heparin doses. We're crossing our fingers that we can keep his bleeding under control while avoiding any clots in his pump. The small speck of fibrin buildup from Thursday disappeared yesterday morning with no ill effect.

And as proof that Eddie does watch something other than Polar Express, here he is watching (surprise of surprises) . . . Percy's Chocolate Crunch. Sense a theme?

Catching Up

Things change so quickly around here that it's hard to remember the details if I skip a day or two, so forgive the scattered update. And before I get to Eddie's status, I just wanted to remind everyone (including ourselves) why we moved to Seattle in the first place. After the endless months of drizzle, rain, sleet, snow, and general sunlessness, we are suddenly blessed with this . . .

And this . . .

And this . . .

And this . . .

One of the blessings of living at Seattle Children's right now are the gorgeous views of Lake Washington, augmented by the many blossoming cherry and tulip trees in Laurelhurst.
When all of the current craziness dies down, we'll gladly accept reservations from out-of-town visitors for next spring / summer. There's really nothing quite like it . . .

So to Eddie . . . he is stable after Tuesday's surgery and actually had very good moments today. The key story continues to be the search for an acceptable balance between bleeding and clotting and we're still not sure where that is. We turned the Heparin off after surgery, but started dialing it back up about 24 hours later. The ICU physicians are super concerned about the risk of clotting and stroke since that has been their experience with several previous Berlin Heart patients. We are continuously monitoring his hematological labs and making adjustments every day. At the moment, his chest drainage is still clear and unbloody with Heparin at about 75% of previous levels . . . that is good.

From a clotting standpoint, his pump looks pretty good, but he does have a spot of fibrin buildup in one valve. We are watching closely and will not hesitate to change out his pump again if needed.

Tomorrow morning, we will take Eddie to the fluoroscopy lab to perform a more intensive swallow test. By giving Eddie liquids of various thickness mixed with barium, we can watch a live picture to see exactly how well he is swallowing. The video below is a fairly good representation of what Eddie will be subjected to except that I assume they won't have him try to eat anything . . . just drink. And if all goes well, we should be able to accelerate his liquid diet regimen (aka apple juice!) . . . fingers crossed.

Sarah and I had the chance again to participate in Eddie's Berlin Heart dressing change this afternoon . . . a process which never ceases to amaze (or shock) us. It's hard to believe a body can handle this kind of intentionally inflicted trauma, but we are thankful for diligent nurses that take such care to treat Eddie's many wounds. While we may have needed to turn away from time to time, we were glad to assist and couldn't help but feel a unique and intimate connection with Eddie. The raw physicality of the experience brought to mind Paul's famous "fleshy tables of the heart" and Shakespeare/Shylock's "pound of flesh." I'll never read those words the same way again :-)

Before changing his dressing, the nurses gave Eddie a cocktail of Fentanyl and Versed to take the edge off. I think we can officially declare this to be the perfect medicinal match for Eddie since he spent the following three hours as lucid, talkative, funny, and spontaneous as I've ever seen him. It was wonderful.

On the homefront, some good news . . . and some not-so-good news. First, our newest Cub Scout took third place in his first Pinewood Derby. Congratulations on a great run!

Unfortunately, our aspiring ballerina appears to have broken her foot and will need to wear a "boot" 24/7 for the next three weeks at least. Ah, youth. While the picture below is not the actual image of her foot, it looks almost identical to the film we saw this morning at the clinic. That would be a fractured 5th metatarsal :-(

Looks like awesome weather this weekend so hope everyone has plans to enjoy it! Bedtime.

He's Back

Another day, another open chest surgery. In case you've lost count, this is number four in three weeks (and number three in the past week). He came back after a couple hours and is stable...intubated...sedated...and not bleeding.

Starting tomorrow, we'll need to restrategize and it will probably involve not running Heparin and monitoring his Berlin Heart extremely closely for clots. Changing out a pump from time to time is preferable to cracking Eddie's chest over and over again.

We're all very tired but grateful he's back in our hands.

Here We Go Again . . .

Eddie's chest tube stopped draining this morning and his morning ECHO showed another pocket of fluid building up in the pericardium. Most likely a clot has developed inside his chest blocking the drain, and he'll be going back into the operating room in about an hour. This is essentially the same operation he underwent last Tuesday and Thursday . . . but at least he doesn't have any clots in his heart this time . . the potential clot blocking his chest tube is in the pericardial sac rather than the heart itself.

Update to follow after Eddie is safely back in our arms.

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.

Weekend Happenings

Since Thursday's excitement, we've been focused on helping Eddie rest and recover which he is doing pretty well. As we speak, the nurses are reading to him and he's fighting the urge to fall asleep. His recovery seems to be on par with the Berlin implantation . . . slowly exercising his vocal chords and muscles. We hope that by the middle of the week he'll be back to the same level of energy as last Saturday . . . when he was out of bed, drinking juice, and playing with his toys.

I haven't written much about the rest of the family since Eddie has been the center of attention, but with the beautiful weather this weekend, probably a couple things worth mentioning.

First, Pinewood Derby week is upon us and Dad has been behind schedule . . . as of Saturday morning, Ian's car still looked suspiciously like a rectangular block of wood. So out came the jig saw, sander, and spray paint and we spent the early afternoon creating our masterpiece. Since we're still waiting to add the racing stripes, you'll have to wait until Wednesday to see the finished product. Welcome to Cub Scouts, "Phil"!

Of course, before we could work on the car, everyone had to lay waste to the neighborhood landscaping in the 3rd Annual (I think?) Miller's Homestead (Phase II) Easter Egg Hunt! (I sense a really catchy marketing jingle coming on for next year). Everyone had a blast as evidenced by the photos below . . . look at that blue sky! Viva la spring in the Pacific Northwest.

As if Easter Egg hunting and Pinewood Derby car building wasn't enough, we managed to pile the kids into the van and visit Eddie at the hospital. And then (joy of joys), grandma offered to sit with Eddie while the Harper clan went off to enjoy the afternoon on the waterfront. What started as a valiant effort to traverse Marsh Island (you'd think the name would have been enough of a warning), quickly became a canoeing trip around the arboretum. Funny how much easier it is to navigate the channels without the lily pads!

(DISCLAIMER: Before the sharp-eyed critics notice that the south pavilion of Husky Stadium is still standing, I admit these pictures were taken last summer . . . but it really was this beautiful yesterday, I promise. Where was my camera when I needed it?!)

Some Easter thoughts to come in a separate post . . . we love you!