Home, Sweet, Home

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So sorry for my delay in getting this posted today…I started writing it this morning and then got interrupted by an away Chargers football game.   (We won, Go Chargers!)  So, here’s my heart cath recap…

After a bit of a discharge delay and a stop at Target in Ventura, Rolf, Rudy and I rolled into Goleta a little after 5pm Friday evening.  We greeted the big kids, got Rudy settled and I collapsed on the bed to “stretch my back” which turned into a 3 hour nap!  I got up long enough to say “hi” to the kids again, sort and start a load of laundry (in preparation to climb Mt. Kilimanjaro again), shower and unpack at least one bag before I fell back asleep to a very solid night’s sleep!  Rudy slept hard too and it was very difficult to wake him up early this (Sat.) morning to take him to yet another Dr. appt for…a flu shot!  Poor thing…that’s a rude awakening for a Saturday morning under any circumstances!  He took it like a little man and was happy that Wilson decided to tag along as Wilson can make even flu shots funny!

Funny Flu Shot

So we’re very happy to be home and although there is a good bit going on this weekend in our household, we’ll try to give Rudy the space to recuperate and rest up.  Thank you ALL for your prayers and words of support and encouragement on the blog, FB and email…we read them all and felt so uplifted during our stay at UCLA.  As we posted earlier, the results of Rudy’s cath are positive and we are encouraged.  Here’s a more detailed explanation to the extent we understand…

Recap of Rudy’s Cath Results in layman’s terms:

Basically, the purpose of the cath was to take a more detailed look at the condition and function of the heart, determine the O2 saturation of Rudy’s blood coming out of his lungs, check to see if his pulmonary pressures (pulmonary hypertension) have lessened and do any necessary interventions (i.e. close anything off or open anything up).

You may recall that the results of Rudy’s last heart cath last October showed definitively that not only had the O2 sats coming out of the lungs not improved but his pulmonary hypertension was worse creating too much resistance for the blood to flow properly…a combination that would make it impossible for Rudy to survive the Glenn surgery (the next surgery to his heart) or a heart transplant.  This was particularly disappointing because it appeared the pulmonary hypertension drug treatment he had been on for 6 months at that time (Tracleer and Revatio – aka Viagra) wasn’t making a difference.  Because there were no other treatment options, nothing in Rudy’s treatment plan changed this year and, as a result, Rolf and I weren’t too optimistic going into this cath.  We were just hoping that his condition wasn’t any worse so it was a bit of a shock (and somewhat surreal) to actually hear good news in our post-cath consultation meeting!  Even Dr. Dan said it felt real good to finally report good news after a Rudy cath!  We’re still in limbo but it’s a hopeful limbo.

In a healthy person, the O2 sats in the blood coming out of each lung is 100%.  Last year the sats in Rudy’s blood coming out of the R. lung was 74% and out of the L. lung was 81%.  In Thursdays test, Rudy’s O2 sats in the right were 89% and 96% (!) on the left (very close to normal on the left side!).  This is significant because it is telling us that the ventilation part of the lung function is healing.  The pressure in the lungs is still too high for Rudy to be a Glenn candidate but it’s better…meaning the process is heading in the right direction!  The half-a-heart doesn’t look any bigger and is handling the craziness that is Rudy’s body.  Bottom line:  Rudy’s lungs are better and his half-heart is no worse.  As far as the Sano Shunt that was put in Rudy’s heart during  the Norwood procedure (1st heart surgery) goes, it is narrowing but still allowing blood to flow and there isn’t need at this point to discuss putting in a larger shunt.

Right now there are two things feeding blood to Rudy’s lungs…the Sano Shunt and collateral arteries that have mutated to create an alternative route of circulation between Rudy’s heart and lungs.  This is not an efficient way to circulate the blood (the Glenn would provide more efficient circulation) but it’s working.  Rudy’s body is adapting and making it’s own way and for now that’s okay.  As long as his half-heart remains strong and doesn’t get enlarged and overworked, the way Rudy’s body is adapting could sustain him for years.  Our prayer, though, is that he’ll continue to make progress and ultimately be a Glenn candidate.  Drs. Dan and Harake saw the need to control the circulation a bit and performed a balloon angioplasty to open some things up and coiled a couple of collaterals to close other things off.  I’m not sure if any of this makes sense but the most telling part of our consultation with Drs. Dan and Harake was their demeanor – we could tell they were pleased (dare I say “giddy”) and that spoke volumes to us.

So the plan now is to increase Rudy’s daily doses of Tracleer and Revatio and give it some more time.  We have our first appointment with Rudy’s new UCLA pulmonologist, Dr. Woo, on October 10th which is great timing because she’ll have all this new cath information and we need to follow-up with Dr. Nina (UCLA ENT) to discuss the next step toward decannulation (wean from trach) as Dr. Dan is eager to see us make progress in this area.  This will all come in time…now that the cath is behind us, we can focus on our final preparations for the the Rescue Mission’s big fundraising event “The Bayou” coming up next Saturday (Rudy’s Birthday!) and then the Heart Walk which is the following Saturday!  Wow, lots coming up!  In the midst of it all, we continue to praise God for His grace and ongoing work in Rudy.  May He be glorified in every step of Rudy’s journey.  🙂

Rudy at Max's football game today...Go Chargers!

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15 Responses to “Home, Sweet, Home”

  1. Uncle Steve Says:

    Wow! Definitely something to smile about! Way to go Rudy! Way to go God! Rudy has always done things his way on his schedule…so it’s perfectly natural that his little heart would figure out its own way to create an “alternate route” for circulation to the lungs. Great and encouraging news!

    Bigs hugs from Kansas to all the Geylings!

  2. kkinzler Says:

    Lots of love and prayers! Thanks for the detailed update.

  3. Grace and Marlin Says:

    It’s been sooooo long since you (and we!) have heard such a wonderful medical report on Rudy….I’m sure you must be giddy with hope! Praise God! Smiles from San Diego. (My class was also glad to hear it went well!!!)

  4. Fran Says:

    God works in “mysteroius ways,” indeed. It is such grand news to know Rudy’s little “half” heart is compensating with collateral circulation and his O2 lung sats are improving significantly since the previous heart cath last year. Hopefully, increasing the two medications will help improve the oxygenation levels in the lungs even more.

    Now, if he can just improve in the sleep study enough to begin weaning from his trach tube, that would be wonderful. Maybe he could wear a c-pap after weaning off the trach tube if his 02 sats are still below normal?? He’s very little for a c-pap but it would be better than keeping the trach tube. I’ve heard of small children wearing a c-pap. Anyway, it’s just a thought but may not even be an alternative for little Rudy.

    I love the photos of him today smiling after his flu shot, ha. He is a remarkable little boy with such depth of character and so wise and insightful far beyond his nearly three years of life. I really like the pic of him all bundled up sleeping at his big brother’s game. He can sleep anywhere – even during an echocardiogram, LOL.

    Lots of best wishes for the upcoming fundraising events. Rudy and all of you remain in my thoughts and prayers. You are all blessed in so many ways…..

  5. Grandma Jo Says:

    Yes, technology is our friend!! Having this report in layman terms is so helpful . Trish could you possibly skip your usual attendance for preparation for the SBRM affair? I know everyone would understand (okay, it is just your mama speaking, I can’t help it!). All is ok here.
    Wish I could be there to eliminate Mt.Kilimenjaro…Love to all.

  6. Kaitlin Says:

    This is so encouraging (Flu shots are overrated). Go Rudy, Go!!!

  7. Lisa Says:

    What wonderful news!!! And we will continue to pray, Rudy, that those little lungs improve and that your special little heart will not have to work too hard. We rejoice with you and your very tired parents…Amen and hallelujah!

  8. Lisa Says:

    Trish,

    I just read your Mama’s sweet comments…and I agree! And when can I come to help you tackle Mt. Kilimenjaro? Call me! I’d love to help!!!

  9. Erin Wilson Says:

    So happy for the report you guys were given. Rudy’s lung function getting better is a HUGE success! Praise God! May Rudy’s Birthday bring a wonderful celebration and a bit of renewed HOPE! Much Love from Buffalo!

  10. Judy Salkeld Says:

    Always in our thoughts and prayers! What an awesome God we have! This report will go down as a praise in my prayer journal. Happy Birthday ahead of time for Rudy!!!!

  11. Bonnie Lisama Says:

    Thrilled to read such great news! Love the good news and we are hopefull for more in the future. Praying for comtinued progress in all areas. Hugs.

  12. Linda Hamilton Says:

    “moving in the right direction”…such good news….such wonderful news!
    enjoy your next two busy weekends…you deserve some FUN!!!

    Linda H.

  13. cici Says:

    I just love answered Prayers… and Rudy. :^)

  14. Joann Saraceno Says:

    Yeah, Geylings! Thank you Lord for your many blessings!!! Good job Wilson for your flu-shot-diversion capabilities! xoxo Jo

  15. Allison & Mike Kenyon Says:

    This is such encouraging news…I’m so happy to hear and am excited for the walk!

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