Happy Belated Easter!

by

Spring is definitely in full swing around here…Wilson’s birthday is now a distant memory, the sorrow of Holy Week is fading, the great joy of Easter is still fresh in our hearts and Mother’s Day is just around the corner!  We had a fun, full Easter celebration yesterday and hope you did too.  🙂  In addition to all the familiar events the spring season holds for our family every year, Rudy was invited by one of his La Patera classmates to a fun birthday party this past weekend…a party that included a bounce house…a new favorite to add to Rudy’s top 10 list!!  Ha Ha  He had a blast and was clearly pleased to hang out with school friends outside of school.  It was fun watching him have so much fun.  🙂

We saw Rudy’s cardiologist last week.  The routine appointment didn’t hold any surprises…there is no change in Rudy’s heart function.  Dr. Harake  feels like there isn’t much need to schedule a heart cath at this time so it looks like we may have a procedure-free summer…which would be great.

The topic of our discussion this visit was the risks we face as we wait.  Since the Glenn (the second in a series of heart surgeries to reroute the blood’s circulation) is likely no longer an option and the possibility of a heart transplant is still to be determined, we are forced to wait patiently.  What are we waiting for?  For the risk of NOT doing something to become greater than the risk of doing something.  As long as Rudy continues to grow and is happy (dare I say “thriving”), there is little reason to move forward in treatment.  It has taken me a long time to be content with this internally…although I’ve been patient and have trusted Rudy’s doctors every step of the way, I have approached each check-in with the SB and LA cardiologists with great anticipation of “the next step”…wanting something tangible…a date in the calendar…an action step (emphasis on action).  This need for a plan is becoming less urgent…I still get a little antsy around check-ins but mostly these appointments sneak up on me and I don’t have big expectations going into them (a good thing).  So, as we wait, there are two main things we are looking for…signs of heart failure (which would put us on a faster track toward determining Rudy’s eligibility for a heart transplant) and signs that Rudy is outgrowing his shunt (which was the topic of discussion with Dr. Harake last week).

What is currently keeping Rudy alive is a tiny 5mm tube (called a Sano Shunt) that was placed by Dr. Brian when Rudy was 5 days old.  In Hypoplastic Left Heart Syndrome patients, the most urgent problem is that the heart is unable to pump blood to the body. The goal of  Rudy’s first heart surgery (the Norwood) was to connect his single ventricle to his body’s circulatory system disrupting blood flow to his lungs and so an alternative path needed to be created to supply blood his lungs. The Sano Shunt allowed (and continues to allow) for this pulmonary blood flow.  The shunt was really only intended to be used for a few months until the Glenn procedure but it continues to serve Rudy well 5 1/2+ years later!!!  Rudy had 2 stents placed in his shunt back in 2012 to open it up as it had decreased to about half of it’s original size over time but other than that, Rudy’s original shunt has gone untouched.  Although we have spent a good bit of time thinking about and planning for the possibility of Rudy’s heart failing, what will likely happen first is that he will outgrow his Sano shunt.  We haven’t talked to Rudy’s surgeon (Dr. Brian) in a long time but since nothing has changed in Rudy’s status, the expected course of action would be to replace the shunt when the time comes.  I’m not sure how surprising it is to the medical community that the Sano has lasted as long as it has in Rudy’s case but it sure seems like we’re getting our money’s worth and then some…thanks to Dr. Shunji Sano’s work, Dr. Brian Reemtsen’s skills and God’s sustaining power in it all! 🙂  We are grateful that Rudy’s body continues to thrive with such a narrow path of blood flow centered in a very small fraction of his body…simply AMAZING!!!

 

Speaking of “amazing”, here are some amazing moments from the past couple of weeks…

Happy 17th Birthday to Wilson!  April 9, 2014

Happy 17th Birthday to Wilson! April 9, 2014

Rudy's first experience in the computer lab at school!  Nurse Sara texted me this pic with the caption "Rudy's dream day at school...a room full of computers".  :)  LOVE it!!

Rudy’s first experience in the computer lab at school! Nurse Sara texted me this pic with the caption “Rudy’s dream day at school…a room full of computers”. 🙂 LOVE it!!

Easter Feast at the Rescue Mission...playing and singing for the homeless guests in the courtyard as they waited...Max and I loved having Olivia (a student from Westmont) join us!

Easter Feast at the Rescue Mission…playing and singing for the homeless guests in the courtyard as they waited…Max and I loved having Olivia (a student from Westmont) join us!

Our Olivia greeting guests with a sweet treat!

Our Olivia greeting guests with a sweet treat!

Rudy enjoying the bounce house at a classmate's bday party...

Rudy enjoying the bounce house at a classmate’s bday party…

...and the friends IN the bounce house!!!!  Yay friends!

…and the friends IN the bounce house!!!! Yay friends!

Easter 2014..."Show us your eggs Rudy!!!"

Church Easter Egg Hunt 2014…”Show us your eggs Rudy!!!”

Rudy's stash!

Rudy’s stash!

Olivia's stash!

Olivia’s stash!

Happy Easter!

The Easter Bunny’s stash!  Happy Easter!

The Easter bunny brought Rudy new swim attire!  The black eye?  Not sure where that came from...it was either from all the bounce house fun from the day before OR from wrestling with big brothers!  Ha Ha

The Easter bunny brought Rudy new swim attire! The black eye? Not so sure where that came from…it was either from all the bounce house fun the day before OR from wrestling with big brothers! Ha Ha

We’ll certainly keep you posted of any changes but for now we anticipate a summer full of wet fun as Rudy sprouts some fins and learns to swim!!!!

 

 

 

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10 Responses to “Happy Belated Easter!”

  1. joyce Says:

    Wonderful blog, as usual. Rudy looks so healthy and happy along with the rest of the family. I love seeing him and that little 5mm shunt doing such a great job. Happy Easter and Spring to all the Geylings, black eyes and all.

  2. Pat Says:

    Wonderful family news! Thanks for the updates. Still praying for y’all, but I think you feed ME spiritually!

  3. Kelly Says:

    Love all the photos. Beautiful and amazing!

  4. JoAn Wilson Says:

    This completes my lovely Easter weekend. Thanks for a very informative update on Rudy and the great pics . Oh, how I love you!

  5. Judy Salkeld Says:

    So thankful for your updates and photos. It just amazes me that Rudy can participate in so many things-computers, bounce houses etc. Everyone is growing up!

  6. Lin Richardson Says:

    I continue to be inspired, grateful and increasingly ‘prayerful’… that God will continue to perform these miracles that keep Rudy going, even against the odds, and the expectations of these tools used to help. We know our God is greater and more powerful than man’s accumulated medical advancements which are given ‘time-frames’. 5-1/2 years and counting……that’s our God.

    So thankful every time I see these family pictures and the precious days spent with Rudy in laughter and joy. PTL

  7. Grace and Marlin Says:

    Glad to see you had a bountiful Easter and that you keep on blessing others while you wait! Love you!

  8. melani beavers Says:

    Precious, precious family! Thank you for sharing! Much love, Melani Price Beavers 😀

  9. Allison & Mike Kenyon Says:

    I love how you look for joy in the waiting. It’s a choice, not always natural, and it motivates me to do the same!

  10. Jen Z Says:

    Thanks for the update! Living in limbo seems so hard. May you be blessed as much as you are a blessing to Rudy!

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