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.

10 thoughts on “Managing Expectations and Emotions

  1. I understand, I really do….glad to hear Rudy is stable. We do what we have to do but it intense. We have transplant clinic on the 27th, you described the waiting room perfectly. You are so right that transplant is not a cure. One day at a time and your family definitely lives them to the fullest. I love the Rudy shredded the paper on the table and struck out on his own. I love his spirit. 🙂

  2. Thank you for this honest, real description of what you are going through.My thoughts and prayers aare with you!

  3. The getting- ripped video brought this story full circle. Mom and Dad had their hearts ripped out of their chests yesterday …..but Rudy comes home to only caring that he is soooooo loved. He is your sunshine. (As I wipe a tear from my eyes..) Give him a hug for us 🙂

  4. This post is one that makes me teary, yet it is so full of love, and emotion, that it makes me happy, because I am just so darn thankful you are Rudy’s Parents.

  5. It is a wonderful blessing that your life in SB is so idyllic and that you can live year-round somewhere where many want to “get-away-to.” You speak from the heart Rolf and Trish. Love and prayers go out to you and your beautiful family. I love the vimeo about “getting ripped !”

  6. Dear Trish and Rolf,

    We sure love you guys. Reading this brought back all the reality of what you live with and what courageous people you all are. Thank you for letting us in to a piece of your life with each of these updates. Our prayers are with you always~
    Sloan and family

  7. The roller coaster of emotions strikes again! If there was any way I could change this wild and scary ride, I would do it in a heartbeat. None of us ever imagined this circumstance being yours on that fun day of your wedding. However, you have soldiered up to the challenge and I am supremely proud of you–Rolf, Trish, Wilson, Max and Livy for the love and caring you all demonstrate each moment of every day. My prayer for all of you is that you maintain your health and stamina, patience and love for our presious Rudy.

  8. After reading this exquisitely written piece about heartbreak and broken hearts, confetti and intensity and anxiety – that sweet little video made me both smile and tear up. You’re doing such a good job, you guys. SUCH a good job in a terrible, scary, heavy place. Love to all of you.

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