The Surreal Life

by
Rudy politely raising his hand and waiting his turn to lead a song during circle time!

Rudy politely raising his hand at school and waiting his turn to lead a song during circle time!

Rudy gets his turn to pick out a song..."Wheels on the Bus" is his choice, of course!

Rudy gets his turn to pick out a song…”Wheels on the Bus” is his choice, of course!

Song leader Rudy with the help of teacher Diane.

Song leader Rudy with the help of teacher Diane.

Yay!

Yay!

Rudy's official graduation from the Bear Club - his special county special ed preschool class!

Rudy’s official graduation from the Bear Club – his county special ed preschool class! May 31, 2013

Graduation after-party complete with a piñata!!!

Graduation after-party complete with a piñata!!!

Today was Nurse Alicia's last day  :(.  She's moving away and we'll miss her lots!

Today was Nurse Alicia’s last day :(. She’s moving away and we’ll miss her lots!

As you can see, we made it home safely from UCLA Thursday and Rudy was all smiles during his last day of school and special graduation celebration on Friday.  Life is surreal…one day we’re  having discussions about Rudy’s inevitable heart failure, potential transplants, the availability of hearts Rudy’s size & some pretty sobering statistics in general and the next day he’s enjoying a special day at school with his classmates celebrating graduation…fabulously ordinary events in the life of a typical preschooler.

It’s hard to describe Thursday’s consultation.  It was a good day…we had the opportunity to ask a number of questions and we got some helpful information but it was heavy and I ended the day drained and a bit heartbroken.  There is no simple synopsis but I’ll try to keep this concise.  Essentially, a heart transplant could very well be an option for Rudy but the process to determine his eligibility is long and consuming.  It would require us to go to the heart clinic at UCLA every 3 months initially for tests, evaluations and monitoring.  It would require a consensus among his specialists and their commitment to focus their care with a potential heart transplant in mind.  It’s a process that will likely take years and  at no time is there a guarantee of a heart.  If just one of the many critical variables considered doesn’t align just right, Rudy would be off the list.

I was surprised to find out that the average life span of a successful heart transplant is 10-15 years.  I suppose if Rudy were in the final stages of heart failure, I’d feel a bit different about it but right now, 10-15 years seems tragically short.  A second transplant could be considered but with  each surgery and with each heart transplant, the donor pool gets smaller and smaller due to the increase of antigens.  The emerging technology of mechanical hearts could eliminate the need to transplant human hearts all together and could be available to pediatric patients like Rudy in just a few short years…could, could, could.  There seems to be alot that could happen!

Right now it feels like a huge and complicated gamble where success is measured by a few years and not decades…a deeply emotional investment with lots of risks and no guarantees at any time!!  Sad sigh.  I’m grateful for the opportunity to pursue it but there isn’t a big sense of relief in considering it if that makes any sense at all.  Luckily Rudy is currently thriving and strong and is no where near the need for the transplant but the larger picture is weighing heavy on my heart and I don’t know where to begin processing the big binder of information we were given yesterday.  I’m convinced this isn’t the week to begin…there is much to do in the next 6 days to finish this school year well…and there is much to do in the life of our family this weekend alone so as best I can, I’m going to set aside the big questions I can’t seem to face today  and fervently pray for God’s grace and wisdom to face them tomorrow.

Thank you for praying for us on Thursday…Thank you for loving our family so sweetly.

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19 Responses to “The Surreal Life”

  1. Melani Price Beavers Says:

    You are precious! Thank you for sharing your life with us. I will be praying for wisdom and discernment for you in the decisions that you are facing. Much love! Melani

  2. Pat Says:

    Praying for all of you this week!!

  3. cici Says:

    Prayers for strength, wisdom and peace of mind.
    God has a plan for Rudy, we just need to trust with all the faith we we muster up. Every little things gonna be all right.
    {{{hugs for you and Rolf}}

  4. Oma + Opa Says:

    Praying as always !!!! Love the little graduate !!!!! Hugs all around!!big and small.!!!

  5. Grace Niklasson VanNortwick Says:

    My heart feels heavy for you…..all the work ahead, and the disappointing statistics in light of it. May you be encouraged that “all the days ordained (for Rudy) are written in His book (Ps 139.) He will make a way for all those days to be lived to the fullest……and it certainly looks like there is always so much joy in our little graduate’s life!!!! Congrats to Rudy!!!

  6. Diana Trautwein Says:

    What hard options – but then, they’ve never been easy, have they? Grateful you’re learning more, but so sorry it is hard learning! I think you are wise to keep that binder closed for a while now – enjoy your family as the school year finishes. Read later, it will still be there, staring at you.

  7. Allison & Mike Kenyon Says:

    I am praying for you too! It sounds heavy and scary but keep taking it day by day and enjoy these last days of school. You are the best parents Rudy could have and the big kids too!

  8. Kim Snapp Says:

    Remembering the families in Oklahoma today Trish, no life is guaranteed, there were school children killed and a baby sucked out of a car with her mother. The “problem” is that you are given the task of participating in the decision making process. A job no parent would relish.

    I bless you with the wisdom that James promises if you ask. And I will give you the advice my friend Leigh Bailey gave me when I was going through cancer treatment: our God is not a God of statistics, He is the God of one. Your one, your Rudy. I rested in being God’s one.

    I will also pass on the wisdom of Don Davis that still boggles my medical mind….”it does’t matter how many miles you run on the treadmill or how many granola bars you eat…God has your days numbered.” That is not what the statistics say, but it is what we read.

    I bless you with resting in the fact that what ever decision your family makes, you are not in charge, God is. Rest in that.

    HUGS.

  9. Cheryl Takahara Says:

    I am sending love energy! cheryl
    (Those school pics sure were cute-)

  10. Amy F. Says:

    I think these are some of my most favorite Rudy pictures ever! How proud you all must be of your prek grad!!
    Thinking about and praying for all of you as you navigate these new possibilities of treatment. Wishing you a little extra strength and peace at this time.

  11. Joann Saraceno Says:

    Ditto on everything that kim Snapp said!!!
    Hugs and prayers for all of you!

  12. Ann Dokken Says:

    Praying for you sweet family!!! Such difficult things like yours remind me to savor each moment. Love you!!

  13. fran53 Says:

    Hear, hear!

  14. Kathy Keller Says:

    I remember when we were told the 10-15 year statistic. It hit me in the gut too. There were 3 years between our first transplant discussion and Garrett’s transplant. He was on and off the list.

    The 10-15 year statistic is just a statistic and a 10-15 year old one at that. A heart transplant 10-15 years ago is a different thing than a heart transplant today. The medications are better, the after care is better…so much is better. It is like comparing a norwood 15 years ago to a norwood today. It is just different and every case is unique. You are also right… between stem cell research and mechanical hearts there are lots of possibilities. Garrett is not a candidate for a second heart at this time and we go day by day and I read voraciously about medical advancement. I understand and it is definitely surreal. Rudy seems So happy though and is really flourishing. He is doing SO well. It is amazing!

    I am thinking of you all. I know how difficult this is.

    Kathy

  15. lisa call Says:

    Rudy is so happy and has such a great outlook on life. Love the photos!

    On the other hand, this journey is so sobering, but we know you are in God’s loving arms. Thank goodness he loves you all more than we can fathom. We love you too…and we’re continually praying for you, and for His grace and peace to cover you. Take a deep breath Trish, and know you are loved!

  16. Grandma Jo Says:

    Congratulations, Rudy! You are a happy graduate and a happy boy. Love that smile! May the heavy hearts your parents feel after the trip to UCLA Thursday be tempered by our knowledge that God is in control of all of our lives and has His perfect plan etched in love and perfection for each of us. Keep smiling, little warrior, and let your happiness shine brightly. You are an inspiration to so many. Hugs and kisses from sky blue Kansas.

  17. Uncle Steve Says:

    Wow! Lots to absorb and contemplate in the midst of a busy life. What an encouragement it must be to read so many thoughts from some who are walking a similar path or others who are just lovers of God and all things Geyling! Count me solidly in the latter group! Love to all!

  18. Kris Says:

    Congratulations Rudy! It seems like yesterday we were doing home visits, encouraging you to roll over and entangle yourself in the O2 tubing, take licks of lollipops, and sign for “more”. You have come a long way with HEART and the best family rooting section on the planet. Have a great summer! Kris

  19. Christy Swider Says:

    Happy Graduation Rudy!!! You did it and you are going to love Big-school!! Have a great summer ….blowing kisses your way 🙂
    Christy aka LaLa

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