Follow-up With Dr. Harake

I haven’t wanted to publish an update this past week and bury our post about the Heart Walk so, in case you haven’t checked-in in a while, will you please take some time to read this post and join our fundraising effort for the American Heart Association?  🙂  We are so grateful for the swift and generous response from many already!

Rudy is back to his energetic self after his heart cath and our family is back to it’s fast-paced slew of activities after laying low for a few days.  Rolf, Max, Olivia, Rudy and I drove down to L.A. on Thursday to pick up Wilson at LAX upon his return from Costa Rica.  It’s good to have him home and we look forward to hearing more about his first foreign missions experience as he rests up and settles in!

Rudy had a follow-up appointment with Dr. Harake this week.  It was a quick stop…no echo…just a quick check of Rudy’s vitals and O2 sats.  Dr. Harake wanted to make sure Rudy tolerated the 5-hr heart cath procedure okay and we spent most of the time talking a little more in detail about the cath results.   As we reported after our consult with Dr. Dan, Rudy is still not a clear-cut Glenn candidate so there is no plan for any treatment to his heart at this time.  If there is a move toward the Glenn, then there will most likely be a need to coil more collaterals before surgery.  One of the problems with coiling collaterals is that, over time, new collaterals grow to replace those that were shut down–a losing battle in many patients and especially in Rudy’s case where the scarring from the pleurodesis he needed creates an even more fertile field for them to multiply.  Most of Rudy’s collaterals are growing off of the subclavian artery so Drs. Harake and Dan are considering a future heart cath where they will line the inside of the subclavian arterty with stents to literally block any more collaterals from growing.  ‘Makes sense to us so we’ll revisit that idea when the next cath date comes around.

Dr. Harake also took the time to explain to us what Dr. Dan meant by a “modified Glenn” during our consult with him after the cath.  (Recorded here as best as we understand it…)  In a normal functioning body, the oxygen-poor blood from the upper part of the body flows into the superior vena cava which takes it to the right side of the heart to get pumped into the lungs to get oxygenated.  Once oxygenated, the blood travels to the left side of the heart to be pumped to the body.  In a HLHS heart, the circulation of the blood needs to be rerouted so that the RIGHT side of the heart pumps the newly oxygenated blood to the body.  A classic Glenn surgery is defined by disconnecting the  superior vena cava from the heart and redirecting it to the right pulmonary artery so the “blue” blood drains directly into the right lung to get oxygenated.  Nowadays, a Glenn is usually bi-directional meaning the SVC is still severed from the heart but is attached to the pulmonary arteries in such a way that it flows to both lungs.  The modified Glenn that Dr. Dan is talking about is a classic Glenn that attaches the SVC to Rudy’s left pulmonary artery sending the blue blood to Rudy’s GOOD lung specifically as his right lung is the one most compromised.  Dr. Harake doesn’t seem as convinced a modified Glenn would be necessary… he feels the blood would naturally drain to the better lung in a bi-directional Glenn because there would be less pressure resistance.  It’s helpful to have a better understanding of it all but, of course, it’s all talk about a hypothetical scenario at this point so we’re not spending too much mental energy on it.   Rudy needs to be a good candidate for surgery regardless of which direction the team takes in surgery so we’ll just cross that bridge when/if we come to it.  We are just so grateful for the amount of physical, mental and creative energy Drs. Dan and Harake are putting into Rudy.  We are blessed to have such skillful and competent docs who have a good balance between focusing on the needs of today while thinking through potential options for the future.

So, our next step is to wait for Dr. Harake to consult with the rest of Rudy’s team at UCLA.  If the they decide not to schedule any procedures in the next 12 months or so then I’ll call Dr. Nina’s scheduler and get Rudy a date in the OR for decannulation!  Because Dr. Woo (pulmonologist) and Dr. Nina (ENT) have both given their consent to pull Rudy’s trach, the final call lies with the cardiologists.  Other than that, we wait and get ready for school, of course!  🙂  The big kids head back on August 27th and Rudy starts on September 4th…summer is winding down far too fast.  We’re definitely going to make the most of our last two weeks of summer vacation so stay tuned!  Ha Ha 🙂

We took advantage of our non-medical trip to L.A. to be tourists with a stop in Hollywood…
…Ripley’s Believe It Or Not…
…the Wax Museum…
…and Universal Studios!
(cuteness)

Blessings Dear Ones!!!

7 thoughts on “Follow-up With Dr. Harake

  1. So glad to be back in the loop. Grateful for all the info and for the possibilities being considered for Rudy. Again so pleased with the way you balance normalcy for the entire family with all Rudy’s issues. I think that is wht Rudy does so well. You are THE BEST

  2. what a plateful you all deal with on a daily basis. thanks for explaining it to the rest of us – and thank you for updating us as we continue to pray for you all. looks like some fun was squeezed in while you were in parts south – that’s always good for the soul (and the heart, I have a hunch.)

  3. Hi Trish, my name is Narisa, we were at Universal Studios this past weekend and my husband Anthony had the pleasure of meeting you and Rudy at the water park area. Anthony showed me the very sweet picture of Rudy and Ava playing together….it melted my heart. I’ve since been reading your blogs about Rudy, what a brave little warrior you have! Ava was sitting with me while I was looking through your pictures, Ava saw a picture of Rudy and leaned in to give him a kiss, as if she remembered him! I can’t blame her, what an inspiration he is to us. We will continue to follow Rudy’s Beat and hope to see your beautiful family soon!

    Love,

    The Hernandez Family
    Anthony, Narisa, Steven, Emma, Erik, and Ava

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