In Recovery

Rudy ended up having a four-hour heart cath. Longer than everyone expected because of what the team saw when they got in there. Dr. Dan and Dr. Harake saw a couple places where stents would ease the workload on the heart and were successful in doing so. More details later but for now we’re waiting it out in PACU until they give Rudy a room tonight. His first word when we got to him was “UP!” so we’ll see how successful we are at getting him to lie still like he’s supposed to. For now, the World Cup seems to be doing the trick!

Focusing on right now (or at least trying to…)

Since getting the UCLA appointments booked for tomorrow and next Tuesday, Trish and I both admit to an undercurrent of dread and anxiety.  The fact that both the Transplant Clinic and Heart Cath only got booked late last week–really short-notice when we’re used to dealing with months of lead time–minimizes the amount of time for brooding but can also create new reasons for worry.  Is there some reason why they feel it necessary to see Rudy so quickly?  The office mentioned summer vacation schedules but even with this, you can’t help but wonder if there’s something everyone’s concerned about that couldn’t wait until the fall.  Or maybe they just had a cancellation and figured they’d squeeze us in cuz they like us and we should stop over-thinking things…

So we made it through the weekend as much as possible by focusing on the here and now–which, when I think about it, is how we’ve learned to navigate life.  Rudy’s heart condition and it’s prognosis is always there, even if we only become more focused on it as there’s an appointment or procedure looming.  But life goes on with all it’s mundane beauty and simple celebrations of the ordinary–made only more moving when we consider the backdrop.

On this note, we had a pretty big celebration yesterday evening when Rudy figured out something HUGE.  Too bad the big sibs weren’t here for it–they may not be able to catch him by the time they’re home!

Pretty easy to focus on what’s going on right now when it’s something like this.  Thanks for praying for our time at UCLA tomorrow.

Schedule Change

Rolf and I got the big kids off to KS Thursday evening and headed home from LAX with our long list of “to dos” we hoped to get done while they’re gone. We no sooner settled in to the quiet house when UCLA called to reschedule Rudy’s heart clinic appt from July 3rd to June 24th…this Tuesday!!!! So we’ve adjusted our schedules to accommodate a full day in LA at clinic.

Shortly after getting the call from clinic, Dr. Harake’s office called to confirm a heart cath on July 1st, again, at UCLA! So grateful for a spot in the queue but it does put my stomach in knots!!

We’ll work on the logistics of it all this next week…stay tuned.

"Bye, Bye Wah Wah"
“Bye, Bye Wah Wah”
"Bye, Bye I-ya"
“Bye, Bye I-ya”
"Bye, Bye Mackey"
“Bye, Bye Mackey”

Missing the big sibs!

Remembering My Dad

Thanks to everyone for the kind messages in response to my dad’s passing. Whirlwind that the last week has been, I was so grateful for the way Trish paid tribute to him. I’ve had a chance to do my own reflection and prepared the following for the memorial service we’ll have this afternoon. Thank you for your continued prayer and concern for our family.

I’ve always found it hard to give brief answers to basic questions about ancestry. Upon hearing my name, the understandable question is usually: “Are you German?” Deeply ingrained pride demands this be corrected: “No, I’m Austrian.” Some face-saving pleasantry is then usually offered to the effect of how neat it must have been for my parents to grow up in Austria. But even this impression must be corrected as Dad was actually born and raised in China. At this point, the conversation is so far past making a long story short and the other party likely regrets they ever decided to make pleasant conversation with me. I’ve often wondered why I can’t just politely let the details go, but I’m certain it comes from Dad’s quiet pride in his journey, the family he came from and the sense of unique identity and heritage he passed on to us.

Dad was a man of discipline. He preached self-discipline to us as kids and set a remarkable (and, to most people, unattainable) example of adherence to routine. He worked diligently, maintained focus, delayed gratification, spent carefully, saved wisely and exercised regularly. He structured his life, planning days carefully in his color-coded appointment book in print that was just a few points larger than microfiche.

Love was closely associated with duty and commitment for Dad. I would not view him as adventuresome or risk-taking, yet he came to America on a boat to pursue higher education and establish himself as an engineer largely to honor the expectations of his own father. In time, his sense of duty shifted to his own wife and children. Thanks to his devotion to his profession and
his labor of love to build and maintain a home in the woods of New Jersey we were well-provided for, and then some.

Dad had a remarkable career as an engineer. In my earliest recollection, I found this impressive but I wondered why he always left the house in a coat and tie if he was going to drive trains. His explanation that he carried his cap in his briefcase and showered to get the coal soot off him before he came home was enough to string me along for awhile. While very few of us have the knowledge to understand specifically what he did, we daily benefit from the technology he and his team developed at Bell Labs in areas such as satellite communication, fiber optics and silicon wafers. His cutting-edge work was worthy of at least seven patents and significant renown in the engineering world, which became very apparent to me when my last name was recognized by more than one professor in entry-level engineering courses at Stanford. This was soon followed by their realization that some apples fall far from the tree as they watched me founder valiantly amidst basic concepts until I finally admitted defeat and beat a hasty retreat to the humanities.

Being an engineer wasn’t just what Dad did for a living–it defined a large part of his identity. “Exhibit A” would be the pocket protector filled with colored pencils (and later, pens) he still wore years into his retirement. Dad read things–sometimes even junk mail–with an engineer’s scrutiny; underlining and commenting in the margins. Around the house, he demonstrated that if a little engineering could make life easier, a lot might create something spectacular…but it also might mean you won’t get the treehouse you asked for when you were eight until you’re a sophomore in high school (but no other treehouse in the neighborhood had a four-point floating suspension system secured by aircraft cables).

Dad also demonstrated that great engineering successes come only with some near-tragic failures. While in our household it was long unthinkable that any American-made car could be superior to the Volkswagens we drove, it was impossible to overlook the non-existent heat air-cooled engines provided during East Coast winters. Therefore our spirits soared as we embarked on a ski vacation with Dad’s engineered solution in full operation. With the weather well below freezing outside, the propane camping heater made the inside downright balmy. Fortunately, the fumes from the melting plastic upholstery alerted us to a problem before the carbon monoxide overcame us all.

Dad was thoughful–in the literal sense. He was certainly very conscientious but to view the term literally, he was “full of thoughts”. His mind never stopped working and it would not be overstating thing to describe him as a genius. He would think things through carefully and then review his thinking repeatedly. He never spoke “off the cuff” but chose words carefully–even if this often meant others had to wait uncomfortably long for him to speak. He held opinions strongly, but was not one to have an opinion about everything. He simply would not comment on things he did not have knowledge of. He was completely confident in the expertise he held but also unapologetically aware that this had limits.

He carried himself throughout his life with European politeness and formality. As unthinkable as it might have been to us as teenagers, Dad demonstrated that you can navigate life and survive quite well without remaining current on popular culture or knowing who every celebrity was. Dad was confident in who he was and didn’t demonstrate any need to conform to what we might have wanted him to be. On a few occasions where I might have approached him too informally, he made it clear that he wasn’t primarily my friend or buddy. He was my dad. This called nothing into question about his love, but simply made it clear that it was not subject to anything within my control.

As driven and focused as he was in his career, I was grateful for the way Dad softened with age. While it was challenging to watch, he maintained a sense of pleasant dignity while his abilities were progressively diminished by Parkinsons. He did not get embittered or angry. He became more able to freely express affection and affirmation than at earlier points in his life. While I wish my kids would have seen the vigorous man who cleared his own wooded homesite with a chainsaw and poured a huge concrete patio around it with cement he mixed and hauled by himself, I’m grateful that they saw his sweetness, contentedness and care.

Over 87 years, Dad led and honorable life. Beyond rich life experiences and professional accomplishments, this is the greatest legacy he leaves and what I hope can be said about my life. He was a person of character. He was faithful to his wife. Everything he undertook was driven by his commitment to honor and provide the family that he loved. I’m grateful for his life and unspeakably grateful to be his son.Opa 2013

Managing Expectations and Emotions

We had our appointment with the transplant team at UCLA Thursday.  It’s hard not to come away feeling spent afterwards.  In one respect, these are like the regular check-ins we do with our doctors here in Santa Barbara but they always include a battle to balance expectations and emotions.  Instead of a quick office visit on a pretty tree-lined street, we have to navigate parking and the environment of a busy research hospital in a major city.  As much as you try to keep things in check, there’s something about the experience that builds your expectations–maybe all these smart people in these buildings filled with nifty equipment will be able to tell us something definitive about Rudy’s prognosis.  Maybe it might even be something really good.

These treks to the Cardiomyopathy Clinic will likely become a routine check-in every six-months allowing the transplant team to directly monitor Rudy’s condition.  We started the day with an extensive echo.  While the machine in SB is perfectly fine for keeping track of things, the one at UCLA is state of the art and that–along with our own improved ability to decipher things–made for a pretty emotional moment as clear, sharp images of Rudy’s heart moved across the screen.  I was making occasional glances up to the screen while trying to keep Rudy still and kept seeing what looked like a small crab claw opening and closing.  I finally just had to ask the tech to back up and focus on it–he confirmed that I was seeing what I thought I was seeing:  the left side of Rudy’s heart–a shrunken little chamber about 1/10th the size of the right one that was chugging away on center screen.  On top was the tiny mitral valve snapping open and shut in tempo with the larger tricuspid valve.

But doing nothing.

It never has.

It never will.

And yet it’s been there flapping open and shut like it’s accomplishing something.  For some reason it just gave me chills.  It felt like we were suddenly seeing our enemy in plain view.  So much unexpected anguish entered our lives because of that little useless snapping lump.

ImageAfter the echo, we had to wait for our appointment with the cardiologist.  It’s hard to sit in the waiting area of the Pediatric Heart Transplant Suite without a pretty hard dose of reality hitting you in the face.  We were quickly back to life in the ICU–lots of beautiful, heroic and blue sick children–some just show up in their pajamas because that’s all they ever wear or they likely know they’re going to be disrobing a lot anyway.  Generally weary parents doing whatever they can do to cope with the intensity:  putting on bold faces, trying to distract kids with humor or electronics.  Frustration breaks through every so often but there are just as many looks of quiet compassion and empathy from one parent to another.  It’s overwhelming to think of how many families are going through such gut-wrenching stuff.  You can’t help but think “Dear God, how will all these kids get a heart?”.

It actually makes you happy to have the kid who’s getting antsy over having to sit in his chair.  We’ve learned if we recline Rudy’s wheelchair far enough he can stand behind it and use it as a walker, so Rudy proudly marched up and down the hallway chirping “Hi!” and “See ya!” to most anyone who would listen (and just about everybody else that didn’t).  At one point Trish took to singing with him to keep him entertained and, as they finished a quiet rendition of “You are My Sunshine”, I looked up and noticed the receptionist was wiping tears from her eyes. This place is just so sacredly intense.

We had a long session with Dr. Alejos during which Rudy tore the paper covering the exam table into confetti and threw it around the room.  We apologized and tried to rein him in, but Doc waved it off saying, “This is great!  I get more concerned when I see the kids lying there not doing anything.”  Even so, it really is a challenge to be having a conversation about heart failure, quality of life and transplant outcomes while one person in the room is carrying on like he’s in Times Square at New Year’s.

Dr. Alejos is in regular communication with Dr. Harake and didn’t see any immediate need to address anything in Rudy’s case.  Rudy’s stability allows them to track things long-term because heart function and size can vary a little from echo to echo, so they really want to watch for progression over time.  Like all the doctors at UCLA, he is very patient and willing to answer questions repeatedly.  That’s good because these appointments are probably turning into periodic reality checks for us.  Life in Santa Barbara with our kids and family thriving can sometimes be so idyllic, we forget about the stuff Rudy is facing.  A heart transplant is a big operation and it does not provide a long-term solution.  It only extends life for a finite amount of time so the longer it can be put off the better.

Just plain heavy.  Simply being back at UCLA revives all kinds of memories from the seven months we spent there–much of it wondering if Rudy would ever get to go home.  We are so grateful for caring doctors and incredible expertise, but as we walked out of the building to debrief and decompress, I reminded Trish of our substitute acronym for HLHS…”Half a Little Heart SUCKS!”  It probably won’t get printed on any t-shirts, but you can’t go through something like this without occasionally just calling things for what they are.  So unreal that anyone would need to wrestle with things like this.  So sad that any kid would have to deal with this.

After all of this, it was so restorative to see Dr. Rick who asked us to page him when we were done for a visit down on the patio.  Sitting there on an obscenely beautiful day (clearly far removed from the polar vortex) we had a chance to catch up on life and see Dr. Brian and Dr. Dan as they were walking by.  Rudy quickly grew tired of grown-up talk and decided to go exploring–which almost always means getting as far away from us as possible.  Dr. Dan, perhaps having a smaller permissable child roaming perimeter than we do, finally had to go give chase.

Image 1
Where ya goin’, Rudy?
Image 2
How about coming back this way to Mom and Dad?
Image 3
[Rudy assumes “invisibility posture”; his way of stubbornly ignoring instructions]

As persistent as he might be in the cath lab, Dr. Dan finally came back without Rudy.

It was a long and draining day.  As therapeutic as the drive home along the ocean can be, nothing beats being back in the friendly confines of home.  Rudy was pretty pooped, but his sibs still made sure he didn’t miss out on some evening roughhousing.

Sleep Tight

Rudy did great today! He was out of the OR by 9:30am but we had to hang out in the PACU most of the day waiting for a bed to open up in the PICU. Nurse Joseph treated us right with a big selection of movies and even scored me a coveted comfy chair while we waited. We finally got settled in the PICU at 4:30pm. I thought for sure Rudy would fall asleep once we got settled but it’s 7pm and he’s still sitting up happily greeting everyone who walks in the room…Mama is tired (up since 3am) so he may be on the nurse’s watch here soon if I fall asleep before he does! Ha ha ha. So grateful for the good care he’s getting once again in this familiar unit and so grateful for a successful procedure all around. Thanks for your prayers! Sent from my iPhone

Have Inogen, Will Travel!!

Rudy’s been battling a lot of congestion this week. As he seemed chipper, I rigged the Inogen to his bike and let him get some fresh air. Once he saw daylight, he took advantage of having no strings attached and went off to explore the neighborhood. Despite how much he huffed and puffed, every time I tried to point him home he gave me an emphatic “NO, DADDY!” and headed in the opposite direction. After 90 minutes, he exerted himself to a bloody nose and and still protested vehemently when I finally brought the excursion to the end. Cute, tough, tenacious little warrior. He’ll be riding to the beach before we know it.

Beyond Description!

Sadly, our wifi access is spotty here and I (Trish) haven’t been able to get online the past two days to share all the amazing details of our trip so far (it’s kinda hard to write posts on an IPhone)! So, for now, I just wanted to report that we made it safely to Give Kids The World and the attention paid to the kids here is beyond description…it’s simply beautiful…it brings me to tears and I can’t wait to share more! Thank you for your prayers for safety…

Rudy on his first plane ride…