Family, Friends and Friends who feel like Family.

We sure have packed a good bit of quality time with people we love in the past two weeks…Rolf made it home safely from Rio after sharing a most incredible life experience with dear friends:

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Goofing around in Rio with Ruben.

Oma came to Goleta and took on Rudy duty for a few days so I could visit my mom & extended family in Kansas:

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Fun in Quinter, KS with Gma Jo and lifelong friend Eugenia!!
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Good times in Goleta with Oma!

And Rudy’s godparents visited for a couple of days from San Diego!!!!!:

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A whole lotta love from Marlin and Grace!

The visits have been brief for the most part but significant on so many levels and good for the soul nonetheless.  We are deeply blessed by the rich relationships in the life of our family and this whole summer, frankly, has been a big reminder of that.

I got home from KS on Sunday and our household jumped back into the swing of the new school year on Monday.  Max and Olivia were the first ones to go:

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First day of school for Max and Olivia – August 22nd.
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The taking of the traditional 1st day of school photo!
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12th grader Maxo and 9th grader Olivia!
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The big send-off by Wilson and Rudy…

Rudy was next:

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Rudy’s 1st day of school – August 24th.
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So, so happy to start another school year!
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Rudy’s new teacher Ms. Ochoa and his aide Jennifer!
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Ms. Ochoa rolled out the red carpet for her 2nd and 3rd graders…
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1st day of 2nd grade!!!

Wilson left for APU on Thursday and starts his classes next week.  We’re heading down to Azusa on Sunday to take the rest of his things and say our official “goodbye”…it was hard to see him go after our fun family summer together but his excitement about getting back to campus and his friends made it a lot easier this time around.  🙂

We ended this crazy week with an appointment with Dr. Harake (SB Cardiologist).  We typically see Dr. Harake within a week of a cath but the appt wasn’t automatically generated after Rudy’s cath in July (as it typically is at the time of discharge) and I dropped the ball on our end as the summer filled up so today’s visit was a little over a month and a half LATE!!!  Yikes!!!  I felt a little irresponsible after talking with Dr. Harake’s office to set up the appointment earlier in the week.  Thankfully Rudy was fine and recovered well from his cath on July 8th but not scheduling a post-cath follow up with Dr. Harake isn’t something we should do in the future.

The discussion today was sobering.  Today’s echo showed that Rudy’s atrium is three times it’s normal size and is bigger than it was in May.  Our discussion turned to the cath results and how it effects where we go from here.  The cath showed that the pressure in Rudy’s lungs has lessened which is significant because Rudy’s high pulmonary pressure (known at pulmonary hypertension) has been a major factor in preventing him from having a successful Glenn and/or heart transplant.  Low pulmonary pressures potentially put surgical options back on the table for Rudy.  I think it’s fair to say that Dr. Harake sees this as a good thing but doesn’t necessarily see it as a green light for surgery.

The reality is that Rudy has been a high risk for surgery for more reasons than just pulmonary hypertension and those other factors are still present.  In addition to the risks that remain, there also remains the question whether or not the rate at which the Glenn will reduce the stress on Rudy’s heart is worth it.  In other words, can the Glenn reduce enough stress on the heart to make a noticeable difference?  Although it’s impossible to predict an outcome, it is possible to factor a general mortality rate given the variables with which we are working.  Dr. Harake encouraged us to think about what an acceptable mortality rate would be for us going into surgery.  That’s certainly a difficult question to answer…a tough process to wrap the brain around.  We haven’t heard back from the team at UCLA yet but Dr. Harake’s counsel is helpful and we pray the conference on Rudy’s case will bring some clarity.  We need good information in the midst of a confusing mountain of unknowns.

Dr. Harake also encouraged us to keep a close eye on ANY possible source of infection whether it be in his oral health or in the redness surrounding an elbow abrasion.  He warned us that a topical infection that enters the bloodstream will attack a vulnerable, compromised ventricle with deadly consequences and so it’s important for us to be vigilant in the prevention of infection.  (Yikes!)  We’ve always known this to be true but today’s warning felt more direct than usual…and heavy in light of everything else.  So, prayers for discernment and protection are at the top of the list…discernment in the decision-making process (still) and protection for Rudy’s heart in the meantime.   I’m ending the week zapped of energy and guarded…grateful but also concerned.  This journey sure can leave one feeling pretty manic/depressive from one day to the next so I’m praying for balance in the midst of conflicting reports as well as stability in this season of adjustments for the whole family.

Here’s one last look at summer:

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Boy at the beach.

Happy “Back to School” dear ones!!!

7 thoughts on “Family, Friends and Friends who feel like Family.

  1. There is never an end to this journey, is there? SO glad you’ve had such a rich summer to help soften the blows from the latest doctor visit. Praying for you all!!

  2. Wow! This is sobering news…..and such tough considerations!!! It’s so incredible to see Rudy’s joy and energy despite what is happening in his body!!! It was so wonderful to have a visit with you…..I admire your ability and the flexibility of your whole family (especially Rudy!….AND OMA) to be so welcoming (and entertaining!) You can be assured for our prayers for discernment and peace through these impossible decisions and sober realizations. We love you!!!

  3. We are thinking of you and praying for you through your discernment. I’m so glad you have had such wonderful visits from family and friends visits that nourish the soul especially at times like this. We love you guys🙏

  4. Prayers for you as you discern next steps as well as the day to day. May God gift you with an inner calm that comes from knowing God’s deep love for each of you.

  5. We will be praying Trish for all of these things that you have shared. THank you Lord for being the giver of peace.

  6. awww love you sweet friend! know you and your precious family are in my thoughts and prayers. Please kiss my little boyfriend, Rudy for me! and of course all the other adorable children in your family! Love you, Mean it! Melani

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