Anxious for Thursday…

We set the appointment for Rudy’s next heart cath early in the summer.  October 21st was such a long way away.  Now it’s almost here–and with it a good dose of anxiety.  Back in January, his last cath showed that he was “not a good candidate” (read he wouldn’t survive) the Glenn surgery that his heart needs.  The pressures in his lungs were too high (pulmonary hypertension) and they weren’t fully oxygenating his blood.  The team was hoping that there would be enough time (at least 2-3 months) for two medications to address the hypertension and to overcome his lung damage.  As we’re always on the lookout for the little miracles along this journey, we recognize one in that his little half-heart has kept right on chugging along to give far more time for all this to work…if it’s going to.

So the challenge lies in not letting our minds get swept up in all of the possible scenarios.  What if the medications didn’t work?  What if the lung function hasn’t improved?  What if they find something else?  What if they decide it’s time to do the surgery?  You don’t want to prepare yourself for the worst; but hoping for the best seems risky given the potential of a let down.  When we look at Rudy and the way he’s developing, we really want to assume things are favorable, but heart kids are tough to read and Rudy has proven to be unique beyond that.  Until we get good data from the cath, we just won’t know.  So, we get sleep when it comes and try to keep our minds from wandering farther than they already do.  We’ll have the information soon enough.

We’d appreciate your prayers for Thursday.  We’ve got a 6AM call time at UCLA, so we’ll roll out of SB at four.  If they do any interventions (angioplasty or coiling collateral veins), we’ll have to stay the night.  This is what we’re preparing for as his last two echos might indicate a narrowing of the aorta that may need to be opened up.  If they don’t see anything to address, we may be able to get out by the afternoon.  We’d appreciate your prayers for a good outcome:  1) for those lung pressures to be nice and low so Rudy would be able to handle the Glenn circulation, 2) for the blood to be fully oxygenated as it’s leaving the lungs and 3) for Rudy’s comfort and safety during the whole process.

Request #3 is especially poignant to us due to his development over the last year.  He is so much more active and so much more aware of his surroundings.  During his extended ICU stay and most of his follow-up procedures, he was relatively passive and calm.  But that isn’t the case now, as evidenced by our ECHO appointment with Dr. Harake this week.


Sure, he looks very cooperative...

But then he got pretty feisty.  I think the paper on the table makes cool noises.  Given that an echocardiogram is supposed to give somewhat detailed and precise measurements of the heart, I marvel at how Dr. Harake accomplished this.  I wasn’t able to video any of the actual test because I had to hold Rudy down (picture calf roping at the rodeo and you’ll get the idea).

Praying that this spunk will carry him through.  Thanks for walking with us.  We’ll post updates Thursday as we have them.

27 thoughts on “Anxious for Thursday…

  1. Praying for all you requested and more (what ever else I think of) Hugs to Rudy and family. If you bump into my friend Kourtney at the hospital please give her a gentle hug for me. XXXOOO

  2. Such a beautiful boy! Picture yourselves all wrapped in prayerful hugs for the rest of the week. I will try to come see you in the waiting room.

  3. Praying for all of your requests and for great outcomes to all the tests!! Our hearts are with you on Thursday and every day!! Love , Jane and Joe

  4. Will continue keeping that wonderful little boy in prayer as well as his parents and siblings! Praying for the doctors too.

  5. You know – I’m sure it was a pain in the neck for the doctor to try and do an echo on that wiggly boy – but MY GOODNESS SAKES ALIVE it’s great to see all that vitality. I can sense you heading down anxiety alley- and thoroughly recognize that dark little byway. So…first of all, I’m praying for you and Trish – for freedom from the hobgoblins in your own minds that quite naturally grow in number and volume as you move toward Thursday. BIG breath in, big breath out…”Lord, have mercy,” as you listen to your breathing. Peace that passes all human understanding to fill your hearts and cover your minds. And then…freedom from any and all complications – traffic/car problems/Rudy-gear forgetfulness or tangledness/delays of any kind while at the hospital. And, of course…an excellent result for our Rudy and a green light for the next leg of this journey. The Rudy-coaster is up and running once again – and we’re right in the car with you, hanging on by our fingernails, feeling the queasiness in our tummies, too. May our good God be very near, very real as you walk through these next couple of days. Be carried by the love and prayers of all of us – picture our prayers (as my friend Lori described her experience while on a recent trip to Haiti) – picture our prayers lining the hands of Jesus and those hands gently holding you all, most especially Rudy, before the Father of Lights. Go in love and confidence that “all shall be well, all shall be well, all manner of thing shall be well….” Love, love, love to you all…

  6. What a busy boy! Our prayers are with you for a successful procedure and for Rudy’s comfort and safety and your peace of mind. I pray you get some good sleep tonight, Tuesday night and Wednesday night. I will call you on Thursday and hope we can visit. Much Love, Lisa and the gang

  7. All the love, support and prayers I can manage for your safe and positive outcome. I’ll lift you all up at Bible study that morning.

  8. Hi Trish,
    I’m sorry that we didn’t get to visit at WBS this a.m. I sure will be praying for all of you! Love that little guy!

  9. I just love that little boy! And his siblinngs! And his parents! Thanks for sharing your anxieties with us and, in doing so, allowing us to help lift those burdens in prayer to our great Heavenly Father who is more than able to carry us all through the challenging times ahead. Love you!

  10. Wow. I allowed myself to get giddy seeing the growth and physical progress Rudy has made….giggling along with him on video and relishing all the wonderful family time you have enjoyed this last Spring and Summer. I allowed myself to ignore the fact that this beautiful child still needs extreme measures to stay healthy.

    OK…back to prayer mode! Give thanks to the Lord, for He is good (all the time!). Cherish the last year + and use it to help stay strong for the coming tests/hospital visits/procedures to come. And remember: this baby we all love named Rudy is a fighter! He has more heart than most people with “normal” big hearts!!

    You all have been amazing: strong, faithful, committed, full of love, laughter and hope! Please know we are holding you and Rudy up in prayer, and will certainly be thinking of you all on Thursday!

    Much love to you all!!

  11. My heart swells as I think of all of you. My mind works hard to stay positive. My prayers are fervent. My strength comes from knowing all of this is in God’s hands. He will be with you and the siblings in additional measure so that you can withstand the pressure. It is difficult to trust as we should, but we know how loved this sweet little boy has become to so many folks and that his life and your special family has significantly impacted all who know about him. Breathe deeply dear ones.

  12. As always our prayers are with all of you. I wish we could be of more help during these stressful times, but know that you will persevere (as always) and we will be here for support. God is good and will provide all things. Much love coming your way.

  13. Wow, dear ones, you carry so much with this little guy. We love you and pray for your family. We ask for healing and th ebest outcome in all areas and for peace and strength for you. We love you! Go Rudy, go!

  14. Praying for you all. Praying for Rudy, you and Trish and the two brothers and sister that love and SHOW the love to RUDY in all photos and videos that you share. Praying that GOD uses Rudy to show us the power of prayer, the gifts that come our way when we surrender to HIM.
    Rudy go to UCLA to visit all your friends, make it short! and come back to SB fast!

  15. Hey my friends, I feel like I have been so out of the loop for awhile now. I wasn’t getting Rudy’s Beat regularly and found I wasn’t on the automatic email. So I just signed up so I can keep up on my favorite Santa Barbara family and precious baby Rudy! I so love and miss you guys and am in shock that tomorrow is the surgery already! Please know I am praying for you guys and for precious Rudy.

    All my love and prayers,

  16. Rolf, Trish and family,

    As always, my prayers are with you!!! To quote from “God’s Yellow Pages (& the Bible!):

    “Philippians 4:6
    Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God.

    God bless you, stay positive and be strong!


  17. Tons of prayers going your way tomorrow! We’ve been there…we just learned to plan on staying overnight! I’m thinking a little bit of Rolf’s singing and falling down might make Rudy’s day, even with the ouchies from the docs!

  18. I can relate to Rudy’s day at the doctor. The paper is a fun play toy! … but, I wasnt that fidgety during my echo a few weeks ago… I just enjoyed watching the pretty colors going back and forth through the mitral valves…

    Hope all goes well today, Thursday… there may be an earthquake drill at 10:21 am…

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