Been a long time since we heard from Rolf

Rolf here. It’s been awhile since I took a turn with a blog post. Some have noticed less of a presence from me here and on social media. I guess I’m finding it more comfortable to process the current journey a bit more privately. I do appreciate Trish’s process and am especially grateful for the prayer, concern and love that reaches us from around the globe as people walk along with us via the blog. Lots of stuff in my head and heart and someday I might get back to a place where I’m writing about it–but rest assured I have good outlets to process things in the meantime.

If you’re willing to buckle in for a long read, I did want to share my keynote from the Community Prayer Breakfast here in Santa Barbara in late September. Amidst the fog of the past months, I’ve been grateful for moments of clear thought and figured I’d share one of them. Many of the words were spoken through my tears, which the audience rightly read as grief over Rudy–only a handful of people knew about the ALS diagnosis which we had only received a few days before. Thanks for loving us.

I had something pretty different in mind last winter when I was invited to do this. I picked one of my favorite passages of scripture and had some really good ideas about what I wanted to say. As time allowed, I had employed a few of the study tools from back in seminary to mine a few profound theological gems and was keeping my eye out for some good quotes, vivid examples and anecdotes to brilliantly illustrate my points. It was going to be awesome: witty, thought-provoking, funny and inspirational but unfortunately pretty disingenuous.

I thought about getting out of this—and Reed was even kind enough to inquire a few weeks ago as to whether I was still up for this. My answer then was a tentative “let me give it a shot” and, if I’m being completely honest, it’s probably even more tentative than that right now.

But for the past nine years, our family has lived in a place where babies die, where kids are afflicted with unspeakable suffering, where parents need to make gut-wrenching decisions, where siblings have to watch powerlessly, where doctors and nurses—who have a choice about where they could practice medicine—fight with such dedication and passion to try and help high-risk patients even with death being so frequently an outcome.
On a daily basis, I work in a place where people have dealt with lifetimes of trauma and heartbreak such that the pain is almost too difficult to put into words—let alone process.
In watching people in this community and beyond, I have learned that life in our world can be brutally creative in coming up with means to crush us. I have watched others suffer things so unthinkable that it would make me rejoice that I only got the kid with the terminal heart defect.

In all of these situations, I have watched people somehow move forward and I don’t completely know why they did it or how they did it, but at least I know it’s possible. At the Rescue Mission, I watch our team work with people whose lives have been shattered—often so badly that they can’t even picture that wholeness is possible and what that might even look like. All they’re asked to do is take one step; do today—maybe just do the next hour. And somehow they heroically summon the ability to do so. We spent many months in the ICU—enough to watch our share of nurses having rotten shifts where tragic things happened to the kids they were fighting so hard for. I saw them fighting back tears as they gathered their things to go home. And I often wanted to ask them, “Why are you coming back here tomorrow? I’m stuck here—I’m not leaving my kid. But you have a choice.”

So, I know that moving forward is possible and I need to figure out how to do that. I wish I could stand here this morning with more clarity on what that path looks like, but the wound is still too fresh. I’m still in the stage of grief where my head spins, basic tasks are a challenge, cogent thinking is so occasional that I’m grateful when it happens and I certainly don’t have resolution. I think I believe everything I’m supposed to about God: That He is good; that He cares; that He turns mourning into dancing and that joy comes in the morning. I’m pretty sure I believe all of that, but I can’t really say that I know it yet. I can’t talk about how God redeems tragedy because that hasn’t happened yet.

So I thought about just going ahead with the outline I started at the beginning of the summer, but when I tried to finalize that, I found myself in a wrestling match. My heart just wasn’t in it.

What’s on my heart? Doesn’t exactly take a mind-reader to figure that out. My little boy, Rudy. Don’t be nervous about saying his name because I think about him all the time. His smile, the sound of his voice, the squeal, the laughter and his trademark snort. I miss the feel of the back of his neck with the short stubby little hairs at the base his crewcut that would poke me in the face when I nuzzled up against him. I loved the way he laughed himself breathless only to plead for more tickling. I want to talk about my son. He was a light. I miss him greatly and there’s a danger that once I start this event will have to include a second meal.

I’m not complete and I’m not sure I’m particularly well so I can’t make very many conclusive statements, but even at this point, I can hopefully make some observations amidst the grief I’m feeling over a life cut far too short:

My journey with Rudy taught me that my purpose in life may be very different than what I pictured it might be.

It was probably back in my college years that I started pondering what my purpose was in life. Understandably, it had a lot to do with career. If I could figure out what I was supposed to “do” then I could take steps to get there academically and, as I entered into the workplace, proceed on a track to get me there. Around that time, my faith took me in perhaps a bit of a different direction as far as ministry and service, but the mindset wasn’t all that different. I was still operating in a framework of achievement—maybe I wasn’t going to build a business empire or innovate something cool, but it was still about accomplishing something “in the kingdom of God”.

That thinking probably led me across decades, until we started on an unexpected journey about nine years ago. It started with 8 months in the ICU and then contained realizations that our son wasn’t likely to live a full life and being his parents wouldn’t include many of the milestones and achievements that often become what we confuse as purposeful parenting. I realized that God would judge me as a father not in how well I prepared and launched a human into the world, but in how completely I loved this little boy. And from there I realize that this is the same standard for my other kids–exceptional, bright and high-achieving as they might be.

While I don’t think I’m supposed to not be thoughtful about what I do from nine to five, if it’s not primary to God then I probably shouldn’t make it more of a focus than he does. My being faithful to my purpose has much more to do with whether I love and am faithful within whatever roles I’m placed in. When we quote “well done, good and faithful servant” at funerals I think our achievement orientation gives us a sense that God would be saying “Good job, I couldn’t have done it without you” and I just don’t think that’s true. I long to hear these words, but I don’t think it’s going to have much to do with whether I was a good Rescue Mission president, but everything to do with the husband, father, son, brother and friend I was.

My journey with Rudy taught me that focusing more on yourself doesn’t solve more of your problems.

In the book I’m never going to write, there may well be a chapter on what I call the “goldfish principle”. We’ve had a number of goldfish in our house over the years and one of the things we’ve learned is that, provided you clean the water, goldfish will grow to the size of the tank they’re in. Leave them in a small tank, they stay small. Give them a bigger tank and they’ll grow much bigger.

I’ve found that problems can be the same way. While you can’t just deny them, sometimes you can limit them by how many resources you can give to them. Rudy’s life required round-the-clock logistics—daily management of at least a dozen medications given 3 different times a day. He never ate by mouth and we had to schedule and give 5-6 feedings a day. There were appointments to schedule, pharmacy orders to fill, insurance approvals to work out—a huge mess of things added to the overriding heartbreak of his condition.

And part of the way we managed it was by realizing that other people have problems too. They may not be our particular heartbreak but they are heartbreaks nonetheless. And we don’t simply need to recognize them, but we also can help them. We can get tricked into thinking that we have a limited reservoir of love and concern we need to conserve it lest we run out—so a crisis like the one we’ve lived in becomes the only thing we can focus on. And unfortunately we’ve discovered that it doesn’t really aid in solving things. Love doesn’t need to be preserved and protected. We likely have way more capacity to love than we ever imagined, and the way to tap that is, not to disregard our own problems, but to make sure we’re looking past them to the things other people are struggling with.

My journey with Rudy made me appreciate our calling to be gentle people.

In Philippians 4, Paul gives what might be a very unique final instruction:

4 Rejoice in the Lord always; again I will say, Rejoice.

5 Let your gentleness be known to everyone. The Lord is near.

6 Do not worry about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God.

7 And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus. (NRSV)

There are a lot of things Paul could have chosen to assert here, yet here he sums it up with gentleness. Based on my perception of Paul as a straight-shooter and unafraid of confrontation, I might have expected him to say something a lot more assertive; calling people to strength and courage. He is completing a letter that was written into conflict. He is in crisis—sitting in a jail cell with severe consequences hanging over his head. He’s been emphatic in clarifying some points of doctrine and spoken clearly of opposition and enemies and while he is preparing the audience for a kind of battle.

Given the environment, we might expect such a letter to send the Philippians off locked, loaded and ready to take no prisoners. But one of the last thing he says is—let everyone see how gentle you can be. Paul didn’t write this letter intending that it make for eloquent reading—he’s clearly instructing people to take a course of action—but within that, he’s saying “If people don’t see gentleness, then you’re doing it wrong.”

I think it would be a mistake to minimize gentleness to mean we should just be timid or sheepish. I don’t think it’s consistent with the rest of the letter for Paul to tell us in the end, “just be meek.” In a sense, one could limit the definition of gentleness to simply something to the effect of tenderness, or mildness which are not bad things. These are certainly part of it, but I think it serves us to build a more detailed description of gentleness. I believe the definition has a connotation of yielding in the sense that one does not need to insist on justice, rights, winning or having our way in every instance.

Gentle people have an air of reason about them such that they are able to let a lot of things go without much hassle. They reserve their energy and especially their anger for things that merit it. Yet there are so many things we have a tendency to get worked up about. We are so attuned to notions of right and wrong that we react so quickly and feel justified in doing so when we are slighted. Whether we’re not getting the respect we deserve, or feel we’re not being treated fairly, or certain of how right and moral we are on a certain point…we can quickly feel that gives us license to tear into someone. I’m amazed at how the internet has created a place where even the slightest everyday annoyance or discourtesy gives us a venue to unleash our umbrage—but is that the mark of a person striving to be gentle?

The issues Paul is writing about are not trivial everyday matters, but of far more importance. These are very important issues and very critical arguments, but even in these there is no point where Paul gives license to tear into the opposition. Being in despair can cause you to lose civility and I have certainly felt the impulse to tear into people, but there’s no footnote saying “those of you who’ve lost a kid get a pass on this one.”

My ability to be gentle isn’t something that needs to be fabricated or some facade I need to somehow will myself to maintain. It’s actually rooted something very tangible. Immediately after he gives the command to be gentle, Paul assures us that the Lord is near. If we were bobbing in the water after a shipwreck and you told me not to be afraid of drowning, it would sure help if your next words were “I’ve got a raft”. If we found ourselves in complete darkness and you told me to not be afraid of the dark, I would be very comforted if the next thing you said was “I’ve got a light.”

So there’s the same kind of comfort when Paul says “you can be gentle. God is near.” My impulse to not be gentle; to lash out and fight for myself comes from a fear of scarcity. I may say, if I don’t stick up for myself, who will? I may be overlooked. I may not be taken care of. I may get trampled. Paul is telling me that I don’t need to panic or fight. God is right here watching over me. And will fight on our behalf. If we believe that the peace of God can guard us, then we don’t need to go through life with our hand on the trigger.

While everyday slights often are a pretty good indicator of how well I’m living out profound truths, the exhortation to be gentle needs to extend to places where the stakes are so much higher. Because if you haven’t noticed, our world is unfortunately not a gentle place. I know that firsthand, but I’m sure there are people in this room who can come alongside me with their own stories of anguish and sorrow. We don’t need to pull the lens back all that far before we start to see incredible atrocities and unimaginable depths of human suffering.

In the midst this world, we need to take notice that, despite being a theologian and a reformer, Paul didn’t say “Make sure people clearly see your doctrinal position” or “Let everyone know where you stand on the issues”. What he did say is “Let your gentleness be known to everyone”.

As I’ve stumbled and limped through the past few weeks, I’ve quickly found that I’m not all that different than the men and women on the patio at the Rescue Mission. The packages may look different and the circumstances may be varied but the yearning for gentleness when the world has crushed you is very much the same. We can be as convicted and right as we need to be, but I’m not sure there’s any way to truly fulfill our calling and take on the burden for people in need if gentleness is not clearly evident. My prayer that such gentleness would be what marks me and the church we belong to.

Amazing (the) Doctors

Rudy had two check-ins down at UCLA this past week. The first was at the dental clinic. I think we’ve mentioned here before that good dental hygiene and care is a surprisingly critical issue for heart transplant candidates. In order to keep on top of this he gets to travel all the way to LA for what usually amounts to a quick checkup–but this one had a little more excitement than usual. Some roughhousing recently led to Rudy losing a front tooth and left the one next to it pretty loose. Upon further inspection in the dentist’s chair (you see where this is going, right?) the second was pulled as well making Rudy the embodiment of a fine Christmas cliche.

Thursday, we had his six-month appointment with the transplant team. While Rudy isn’t listed as a transplant candidate, this serves as a means for the team to stay current on his condition. Trips like this to LA are significant not just because of the appointment itself, but all that comes with just being in that place again–the memories evoked by stepping over a familiar crack in the sidewalk, recalling a conversation had at a particular lunch table, the emotions that come from walking by a bench that you once tried to gather yourself on, and the likelihood of running into some of the incredible people that were such skillful and compassionate guides during Rudy’s fight there. Add to this the fact that Rudy was consistently emphatic about walking instead of riding in the wheelchair. Not sure how much he knew about where he was but it gave me a lump in my throat to see him stomp down hallways with his mix of determination and mischief.

He had an extensive echo done and then we met with Dr. Alejos. Nothing really significant to report in either direction there. Everyone is extremely impressed by Rudy’s weight gain and developmental growth–Dr. Alejos always comments on how much he likes to hear the racket of an impatient kid waiting in the exam room and welcomed Rudy’s rambunctious energy. He observed that no change is a good thing and didn’t see anything on the echo that would make him want to do a cath. Even though he wouldn’t consider Rudy a candidate for any surgical intervention at this point, he also doesn’t see any imminent need. We asked him if it surprised him that Rudy would be doing as well as he is and he answered, “If I was just looking at files and reports, I would envision a very different kid–but I know how Rudy fought his way through challenge after challenge here in the ICU. There’s some things we just can’t define in medical terms.”

After wrapping up at the clinic, we decided to pop up to the 5th floor. We weren’t going to bug people by ringing the bell to enter the ICU and only intended to take a lap around the hallways and let Rudy see the pictures of penguins and puffins we used to look at–until Dr. Andy popped out just as we were walking by and waved us in to say hi to the crew on duty. So great to see Dr. Andy M, Dr. Andy S, Dr. Myke, Dr. Julianne, Jennifer, Roger and several of the nurses still there. Rudy didn’t disappoint and strutted up and down the hallway, saying hi to everyone, wanting to play with their computers and machines and trying to run away from us. Hard to put into words what the feelings were to see our seven year old strutting past his old room–in the unit where he was the first patient–and rooms where other kids were now waging their own fights.

Unbelievable.

There were several times during the seven months he was in the CTICU when I wondered if Rudy would ever make it out of the unit. I don’t think I ever imagined I’d see him walking through it with his trademark giggle and chatter. A sacred moment caught us by surprise. So grateful for this place and the exceptional people there–and glad they could get a glimpse of the rich life the little baby boy they watched over seven years ago now has.

After our quick visit there, Dr. Rick left a meeting to greet us in the lobby and Dr. Dan (who had already read the echo report) and Dr. Greg came and met us on the sidewalk outside the lab. In both instances, they were visibly surprised when Rudy walked up to them and we enjoyed visiting in between taking turns running after him. All of them were so affirming of his progress and we were so grateful for the amazing people who have come along us in this journey and focus so much incredible expertise on Rudy. (In fact, we were so amazed, we forgot to take any pictures…boo!)

We have, however, captured some Christmas fun so far this month…

Trish, Max, Olivia and Rudy braved the frigid temps (of about 55 degrees) and helped officially usher in the holiday season in the annual Santa Barbara Holiday Parade.

Saturday included our family’s favorite Goleta tradition…Christmas at Stow House!!! Santa recognized Rudy and greeted him with outstretched arms & great enthusiasm as Rudy walked up to the man in red all on his own.

Rudy studying Santa hard right before it was his turn to say hi. — Rudy waiting his turn to say hi.

...an extra long ride around the lake. — …and we got an extra long ride around the lake.

Anticipation for Christmas is growing! We have the SBRM staff celebration to look forward to this week and the arrival of both Oma and Wilson on Thursday. With the bulk of Rudy’s key doctor appointments behind us, we are ready for some more serious Christmas fun.

Remembering Gwendolyn

We said goodbye to Gwendolyn Strong last weekend. She was an inspiring girl with heroic parents, Bill and Victoria. On our journey with a medically fragile child, we haven’t really found that “support groups” work. Life with a family member in need of round-the-clock care is uniquely demanding such that carving out time for structured activity and another meeting is very difficult. But we have come across people who serve as valuable examples and encourage us in our own journey by the way they navigate theirs. While life doesn’t allow for extended and regular contact, when they live in your town you can run into each other occasionally, you can touch base with a question about a doctor or local resource, and— perhaps more than anything—you can get a knowing nod, smile or sigh as you keep battling on.

Gwendolyn was an amazing child who lived an amazing life and, while it’s hard to look past how much a terrible illness robbed her of, it was a life so abundantly rich in love from friends, family, our community and the world beyond. But no one’s love was more evident than that of her parents—and I’m so glad Gwendolyn experienced that. Bill and Victoria were knowledgeable advocates who fought hard alongside their daughter. They never lost sight of the severity of her condition and the likely outcomes, but also constantly kept the fact that she was a little girl filled with wonder and personality in view. They nurtured, celebrated, trusted, challenged, inspired and pressed on. While their child’s condition would have justified narrowing their focus and attention only to their own family’s concerns, they looked broadly beyond themselves to other families facing similar struggles and poured energy into a foundation so that future suffering might be spared.

THE PART WHERE I (ROLF) MAKE THIS ABOUT ME: I’ve got no real eloquent way of wrapping this up and I’m very hesitant to go on as any grief I might be feeling is nothing compared to the Strongs’ heartbreak, but I guess since this is my blog about me I can do that here.

I was in a bad mood in the evening after the memorial service. At first I thought it was just frustration over a few things breaking around the house, but it became clear at 2am that things were running deeper. A few years ago, I remember coping with Nina’s memorial by going numb. Not sure I’m doing that now, but the thoughts that fly through your head at that hour can be torture:

Rudy is an outlier—like Gwendolyn—having lived significantly beyond what several doctors might have thought. that’s cause for celebration…but also makes you wonder how long such a run can last. you can be the best special needs parent in the world and that won’t save your child. with life dominated now by care needs, how could we ever adjust to life without them? not sure if I can list all the kids in our circle who’ve died. i can only think of three HLHS kids Rudy’s age we’ve been following since birth who are still alive. when did their parents know it was the end? what kind of warning will we have? we know of two kids who died on the transplant table last month. i hate that I go to kids’ memorial services and actually entertain what things I might include at my son’s.

Once the musings start, it’s kind of hard to stop the avalanche. Scary to stop all the activity of life to verbalize the raw questions we wrestle with and the feelings that accompany them. I’m grateful to have fulfilling and meaningful work as well as commitments and hobbies that demand a healthy degree of focus and energy, but events like this can trigger a temptation to dive into them to the point where they become a distraction. Don’t freak out–we’re OK. This is our reality. We laugh a a lot and embrace all the moments of beauty we capture on this blog. Perhaps the fact that they take place amidst the undercurrent we don’t often talk about is what makes them all the more precious.

Still no eloquent way to wrap this up. Time to hug my family and gaze in wonder at the little half-heart warrior.

A Day at UCLA

It’s been awhile since I (Rolf) posted on the blog, but since I did the run with Rudy down to the UCLA Transplant Clinic, we figured I should provide the update. With the end of the school year upon us, it seems like there’s some activity or event every day. Thursday it was Livy’s turn as she got inducted into the National Junior Honor Society. Trish stayed home for that and Rudy and I rolled out of town shortly after 5am to make it to UCLA for an 8am appointment.

Not long after we were underway, I realized that the CD case wasn’t in the car, but Rudy wasn’t bugged because his recent favorite–“Hola!” a Spanish-language Kid’s album of songs about the sea–was on board and entertaining us. Enjoyable for both cultural and education purposes for a listen or two, but assuredly crazy-making by the fourth repeat (“Yo soy un pi-ra-ta! Yo soy un pi-ra-A-A-ta!!) (“Cuantos peces diferentes colores hay en el mar?” How many different colors are the fish in the sea? EVERY BLASTED COLOR!!–and there’s a verse for every one of them!!!) My subconscious desire to bring an end to this caused me to accelerate faster than I normally would as was pointed out by the law enforcement official who pulled me over. Full disclosure: I’m ashamed (but admittedly relieved) to report that my smiling son singing his Spanish fishy songs in his wheelchair spared me a pretty expensive ticket. During the traffic stop, I was able to locate the only other CD in the car–Olivia’s Taylor Swift–and begged Rudy for a switch to even this, but “Hola” remained the soundtrack for our day.

Anyhow, we got to UCLA and the action started:

Rudy stayed nice, still and happy for his ECHO.

After that, we went to the exam room to wait for the doctor.

What waiting patiently looks like... — What waiting patiently looks like…

But Dr. Alejos was delayed up at the hospital…

This is what waiting over an hour ends up looking like... — This is what waiting over an hour ends up looking like…

Nurses were apologetic as they kept us posted. When Dr. Alejos came, Rudy held the door closed and giggled when he couldn’t get in. When he did let him in, Dr. A took a look around the trashed room and said, “This provides us with most of the information we need about how Rudy’s doing.” He did go on to do a thorough review of meds, recommended a few changes because of Rudy’s weight gain (he just broke 40lbs–yay!) and filled in history since our last check-in. We then talked through the Echo report on the computer and he liked what he saw. The heart function looks good with very little valve leakage. While Rudy has been previously classified as “Moderate Heart Failure”, Dr. A would still categorize him as “mild” (or maybe “mild-plus”). After a quick listen, he pushed out the date of our next clinic visit to six months–no need to come back sooner.

Getting his "good patient" on... — Rudy getting his “good patient” on…

Rudy knew it was time to go and before I could get his stuff picked up and his chair ready, he had already given Dr. A and the nurses his “See-Ya”s and headed down the hall. Wouldn’t get into his chair (“no! no! no! Dad!”) in the lobby or by the elevator and walked all the way out of the building.

Before we left UCLA we had a few folks we wanted to see, so we made our way up to the hospital and enjoyed a quick visit with Dr. Rick (who is now the Chief Medical Officer of the entire Reagan Medical Center, but we knew him back when he was just the best doctor in the world). Rudy’s got friends in high places! After that we had a fun lunch with our friend Melanie in the Development Office. (Panang Chicken from Mr. Noodle is really yummy even when you aren’t stress-eating it as an CTICU parent!)

Didn’t get to see Dr. Dan, but it really lifted my spirits when I got an e-mail from him while we were still on campus:

“Saw Rudy had an ECHO today here at UCLA – the stent we put in his aortic coarctation continues to look great with no significant gradient and his RV function has not changed much (still fine) but he has less hypertrophy in his heart since the stent and less tricuspid valve leakage (both good things). His Sano with all those stents in it is still open but very small compared to his heart now. Right atrium is big but not bigger!

How is he doing? Were you seen by someone today? Let me know if I can help with anything – just looking at his ECHO made me happy and hopeful so I wanted to e-mail you guys!

Dr Dan”

So, a pretty good check in and report. As we’ve been so amazed at Rudy’s stamina and progression, it is comforting to have the internal report be consistent with this. We’ve had our share of the more confounding “not sure exactly why he’s doing as well as he is based on what his heart looks like” consults. Rudy and I headed home and I can report that I did much better at obeying traffic laws (but the traffic and rain likely had a lot to do with that). There’s much excitement to come in the next month and we’re so glad Rudy is at the point he’s at to really enjoy it. Stay tuned!

Full Metal Jacket

Thanks for praying us through a loaded day yesterday. Given the haste with which this cath was scheduled–and some of the past experiences we’ve had of cath results being a kick to the gut–we were a bit apprehensive leading into things and probably even steeling ourselves for some tough news.

Our anxiety was heightened by the discussions during pre-op. The primary goal was to see if there were any things that could be done to lessen the strain on Rudy’s enlarged heart. Signs pointed to the coarctation in his aorta (fancy doctor-speak for a tight bend which restricted flow–like a stubborn kink in a gardenhose). The team has previously tried to correct this by inflating with a ballon, but the bend acted like a crease and it popped back. The way to fix it would be to insert a metal stent, which is common in adult patients, but Dr. Dan couldn’t think of a patient as young as Rudy in which he had ever done it. The main problem is “getting the equipment to the jobsite”. The large stent and catheter they would need to do the job would need to be threaded up the femoral artery from his leg and there was concern it just wouldn’t fit. Additionally (and admittedly a bit disheartening) is the fact that the left femoral artery is Rudy’s last un-occluded path to his heart. Even the most skillful intervention creates scarring and an artery can only be used a limited number of times before it becomes impassable, leaving more complicated surgical cut-ins as the only option. So the team needed to weigh whether any intervention was worth that cost, but they wouldn’t really know for sure until they got in and assessed things.

Needless to say our heads were spinning more than usual as we headed downstairs–but at least it took away our appetites and kept us from stress eating our way through the waiting. Good company and a lot of drop-bys from docs and nurses helped to pass the time. We got a progress call from the lab nurse around 3 hours in that they had stented the Sano shunt (which had narrowed significantly) and were finishing up–no action on the aorta. Not bad news, but we kind of prepared ourselves for a “there was really nothing much we could do” conference.

Just a few minutes later we got paged again and Dr. Dan was on the phone rattling through the positives: heart function looks better than everyone feared (perhaps the reason we suspect they rushed us in), they were able to open up the Sano to its original size, and now they had just finished a consult with Rudy’s surgeon and did feel that they should attempt to stent the aorta.

The significance of the moment only hits me in hindsight, but almost unnoticeably things shifted into the quiet intensity that one can suddenly find themselves in in the cardiac world. Just as Dan told me that Brian Reemtsen (surgeon) was coming coming out to speak to us, Brian stepped around the corner. We had a brief three-way exchange with Dan in my ear and Brian in front of me to make sure I understood what was happening and that they were in agreement. Dan finished with, “we will stop at any point if we feel it isn’t safe, but do we have your permission to proceed?” Of course, I agreed but it was only later that it struck me that this was not a routine procedure. Even with the global consents we had signed in pre-op, there was something about what they were attempting that they felt like they needed specific consent for.

Dr. Brian spent time with Trish and I expressing encouragement over Rudy’s condition and that, given the strength of the heart muscle, it was very worthwhile to attempt a step like this to reduce the strain. While any future surgical course is still unclear, successfully addressing the coarctation would have to happen first. Brian certainly wasn’t promising anything specific, but there was a note of wonder that we might be talking about that someday.

We had a bit more to wait before Dr. Dan showed up to give his report and walk through the imagery. He was very upbeat and told us right away that the aortic stent could not have turned out better. The arc had narrowed to 9mm and they were able to insert and expand a stent to 16mm–the size of an adult aorta–which means there is no pressure gradient across it and the blood flows freely!

As the nurse told us over the phone they were also able to fully rehab the Sano shunt to its original 5mm diameter. It had shrunk down to 2.2mm at it’s smallest point, but they used multiple stents and balloons to get it back to its original diameter. As this is supposed to be the primary means Rudy’s heart has to oxygenate his blood, it’s very good to have it free and clear (and gives us chills to think how tiny it had become). Dr. Brian also commented on how amazing that little shunt has performed–he hasn’t seen one last so long and serve a patient as well as Rudy’s has. That could raise concern that we are well past borrowed time, but Dan said he’s now given the Sano and the aorta “full metal jackets” by lining them with stents which will keep them stable, open and clear for a long time.

Dr. Dan was very pleased, but also wanted to get back to Rudy as he was very concerned about the femoral artery. He said they would watch that very carefully overnight as a bleed there would be a major issue. As you can already tell, the time in recovery went really smoothly and Rudy was peaceful and content to lie still like he was supposed to for the rest of the day and slept through the night. Among the more significant developments was that his 02 sats were consistently in the high 80s (compared to the low to mid 70s where they’ve been of late. Since this was his first post-trache cath, it was also the first time he was intubated, so he had a scratchy throat and barely spoke above a whisper–until the moment he saw his big sibs at home had him squealing with his trademark joy.

We’ve learned to navigate this journey and all its big uncertainties by looking for reasons to celebrate and embracing them. That’s what this day meant for us. The big questions didn’t get answered and the major issues didn’t get resolved–but who knows if and when they ever will. For now, we’ll celebrate Rudy’s armor-plated arteries and the positive step they are.

Family FaceTime makes hospital stays more fun--but nothing's better than being together in person again! — Family FaceTime makes hospital stays more fun–but nothing’s better than being together in person again!

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.

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.

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.

After 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.

How about coming back this way to Mom and Dad?

[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.

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.

Arrived Safely

We made it safely to FL and from the get-go we’re amazed at all the special things people do for wish kids. The pilot insisted Rudy come in and look over the cockpit. Livy squeezed in cuz she’s cute too. As cute as I made myself for the picture I never got a turn in the seat.

Almost too much happening to take pictures or blog, but so overwhelmed by God’s goodness to Rudy and our family. On with the fun!