First Week of Summer!

by

Today is a hot and hazy day in Goleta.  The SB County wildfire that made the national news this week broke out in the canyons just north of us Wednesday afternoon.  The sundowner winds we get this time of year have aided in fanning the flames over the past couple of days.  There is little threat that the fire will make it’s way to us but it’s definitely blanketing our community with smoke and a thin layer of ash on everything.  We escaped the smoke and ash yesterday with a trip down to UCLA but we’re back home today and finding ways to keep busy inside.  It is beginning to heat up so we’re praying the firefighters are able to keep their ground and stay safe as the heat, high winds and drought conditions in our area make for serious hurdles in the fight against this wildfire…just the beginning of a long fire season ahead.

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I brushed the ash off my car this morning and then walked back out a bit later to run some errands to find this on my windshield…

So, our first week of summer has been filled with a few key medical appointments for Rudy and some fun too.  Cousin Josh (who is interning for Disney this summer) took time away from the “Happiest Place on Earth” to visit us for a couple of days.  Since we live so far away from both sides of our family, it’s always extra special when family visits.

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Fun with cousin Josh from Alabama!

Olivia’s 8th grade promotion celebration continued at church the following Sunday when the graduates from 6th grade, 8th grade, high school and college+ were recognized.  It’s still hard to wrap my brain around the fact that she’ll be in high school this fall.  🙂

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A big congratulations from Pastors Aaron and James. 🙂

We made two trips down to UCLA this past week.  Rudy had a thorough echo exam at the pediatric heart clinic last Thursday and had his check up at the pediatric dental clinic yesterday as well as a quick conference with Dr. Dan to discuss our plan for the summer.  The good news is that everyone involved in the discussions are in agreement.  Based on information from our bi-monthly appts with Dr. Harake here in SB and the echo results from our trips to the heart clinic at UCLA, there are signs (i.e. high hemoglobin levels, increase in tricuspid valve leakage, bluer lips & fingers in general, etc) that Rudy’s heart failure is progressing.  Everyone is in agreement that there is a need to take some stress off his heart and help it work more efficiently but the question remains whether or not the potential benefits of another open heart surgery are worth the risks.  As Dr. Dan put it yesterday, we could intervene and Rudy could do great and we’d be wondering why we didn’t do something sooner, or we could intervene and make things much worse.  Rudy’s condition may be worsening, but the concerns remain the same and I’m not sure if the pendulum has swung far enough to tip the scale in the opposite direction from where we are now.  Because there are SO MANY conflicting factors and SO MANY pieces to the big picture scenario that’ll be impossible to align “just right”, I’m trying to prepare my heart for the decision to move forward to be based more on faith than hard science…(note: not that this journey has EVER had “easy” hard science answers but one always hopes for it!)

Before making a decision to schedule an open heart intervention which could include a tricuspid valve repair, shunt replacement or modified Glenn, we need to get the cath scheduled…I’m still working to nail down a date.  The goals of this cath will be as they always are:  to measure all the pressures, possibly open up the existing Sano Shunt (controlled blood flow) and definitely coil more collaterals that continue to sprout like a roadmap (uncontrolled blood flow).

So here’s a quick recap of our day yesterday…

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Rudy’s view from the dentist’s chair!

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Rudy got a great report from the dental clinic! Good oral health feels like a major victory and we’ll take it! High Five Rudy!!!

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Next stop? Conference with Dr. Dan. Rudy was more interested in Dr. Dan’s badge than the computer keys. “Don’t let go Rudy!”

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Rudy’s heart on the big screen.

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Rudy the Rascal had the most fun snatching doctor badges as we talked.

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Once we were done with all the official business, the boys ditched the wheelchair and transported Rudy big brother style!

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We played a little elevator bingo…

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…and ran into nurse friends on break.

All in all, it was a productive day at UCLA and I look forward to getting the cath scheduled so I can piece together the rest of our summer.

Today our thoughts and prayers shift to Wilson as he prepares to leave for Fort Knox.  He leaves early tomorrow morning and will be gone for a month of ROTC cadet training.  We’re sure going to miss him around here but he’s excited. He’s a little nervous but knows he’ll be fine once he gets there.  ‘Praying for his safety and that it’s a good experience for him over all.

Thank you all for your continued prayers and encouragement.  God is good and gracious and loving and merciful and constant & my hope rests in Him…always…but especially when personal concerns swirl and thoughts of the broader concerns for our country and global community are on the forefront of my mind as well.  Love and blessings to you and yours dear friends!

 

 

 

 

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5 Responses to “First Week of Summer!”

  1. Oma Says:

    with love and Prayers to ALL.

  2. Oma Says:

    oh yes, tx for the thorough update !

  3. grace and marlin Says:

    Heavy decisions. Will pray for peace in your decision! So glad your summer is here and your whole family is here for now…

  4. Lisa Says:

    Rudy the Rascal! Love that! And what a huge smile!
    Praying as Wilson goes to ROTC training. And for you all in the discussions around Rudy’s sobering situation. Thanks for the update, Trish! XO

  5. Bonnie McCall Says:

    Our prayers continue for each of you. Your family is an amazing example of living each day in God’s hope; honest, open, loving and determined. Thank you for your example.

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