14 April 2012

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?

13 April 2012

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.

10 April 2012

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.

09 April 2012

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.

08 April 2012

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!