Home Safe & Sound

Ahhhhhhh, we are headed home after a restless night’s sleep and we’re all pretty grateful we’ll be sleeping in our own beds tonight!  Rudy’s discharge went pretty smoothly this morning and after an echo, a check-in with one of the cardiology fellows and a visit from Dr. Rick, we were on our way by 1pm.

As Rolf mentioned briefly yesterday, the cath results are favorable.  Rudy’s lung function is, indeed, improving.  He’s still not a Glenn candidate but, like last time, he is heading in the right direction!  One report that surprises us in particular is that the O2 sats coming out of his right lung are measuring in the 90s!  To put things in context…when Rudy was diagnosed with his chronic lung disease and put on a continuous supply of oxygen in June of 09, his O2 sats coming out of both lungs were in the low 70s (meaning that the blood coming out of the lungs was only 70% oxygenated when it should have been 100%).  Over the past two years, we have seen gradual improvement in the left side to where it reached the upper 90s last fall but the right lung was still measuring in the 70s…this made sense because the right lung saw the most damage during Rudy’s battle with the chylous fluid in his chest cavity after the Norwood surgery in 2008.  Well, being patient has paid off as it looks like the O2 sats coming out of both lungs are near normal.  This is thrilling news and an indication that the lungs are slowly healing.  Dr. Dan even questioned why we still have him on oxygen!!  In follow-up conversations, no one is willing to dc the supplemental oxygen at this point but it’s definitely something to keep an eye on!

Rudy’s pulmonary pressures are still too high for surgery but better than the numbers last fall so, again, there is reason to celebrate.

Rudy’s heart function is stable…it is enlarged as Dr. Harake mentioned in our last office visit but Dr. Dan didn’t make mention of it being a problem at this point.  Our biggest battle right now is to keep the blood flowing while we wait.  The 5mm Sano shunt that Rudy’s surgeon, Dr. Brian, put in during the Norwood procedure has gradually gotten smaller over time as tissue encapsulates it.  Even if it wasn’t getting smaller, the team would usually expect kids to outgrow these shunts–there are some who marvel at how Rudy hadn’t already grown out of it since so much time has passed since the Norwood.  Yesterday’s cath showed that it was down to 1mm–very small by any standard (we found it hard to believe them when they told us not to worry that it was all of 2.6mm a year ago.)  Drs. Dan and Harake first attempted ballooning the shunt to expand it but that didn’t work so they ended up implanting two stents and got it open to 4.5mm.  This will keep the blood flowing between the heart and lungs and buy us some more time.  Ironically, they did not balloon or stent the aorta as originally planned.  We were under the impression that stenting the shunt was a more pressing matter to address.  I’ll have to ask Dr. Harake more about that at our follow up echo next week.

Lastly, Rudy’s body is continuing to forge it’s own answer to the lack of passageways for the blood to flow by producing new collateral veins.  I’m still amazed at the human body’s ability to create these webs of alternative routes but the collateral veins create problems.  In order to have a successful Glenn down the road, the Drs. need to be able to control where the blood flows and these collaterals that are trying to serve a purpose end up becoming an inefficient way for the blood to circulate and weaken the whole system the docs are trying to construct.  As a result, Drs. Dan and Harake coiled a bunch of them yesterday (literally with coiled wire) and even used a special $4000 glue for one particularly large collateral.  Unfortunately, there are many, many more that will have to be coiled down the road but they got the big ones for now.

As always, we are blown away by and so grateful for the great care Rudy is getting and walk away from this procedure grateful to God for His work in the healing that is happening.  We continue to walk one baby step at a time!  Thank you for the many prayers offered up for our boy and family.  We are so relieved to have this one behind us and by the look on Rudy’s face as we drive into our cul-de-sac, I think Rudy’s relieved too!  🙂  Blessings dear friends.

A "not so spunky" Rudy leaving Westwood...
Livy got Rudy set up with Toy Story 3 when we got home...so sweet!

15 thoughts on “Home Safe & Sound

  1. Wonderful news! We’ll keep praying those lungs improve enough for Rudy to be able to have the Glenn. What a relief to have you home again…I pray you all sleep so well in our own beds tonight!

    Love and hugs to all of you…

  2. What a great and amazing report, Trish! So encouraging!! And, not to be taken for granted, it really is a miracle that this little half-heart is doing so well and improving! God is so good. He is displaying His grace through Rudy just as you all are displaying tremendous faith…a pretty good show for all of us!!

    Love to all!

  3. Relieved and gratefully happy with you all… may things settle a bit for now at home! and more fun with Oma and Opa.

  4. Phew! Another roller coaster ride and a safe landing. PTL!!!!! I join the others asking prayerfully that the opportunity for some rest and recovery will be possible for all of you. Thanks for the updates. Peace and much love………….

  5. Wow. Just that. WOW. Thank you, God. Thank you, medical team. Thank you, Rolf and Trish for your faithfulness through all of this. Thank you Wilson, Max and Livvy for your tender loving care of your amazing brother. And thank you Rudy, for teaching all of us so much about modern day miracles. This is truly astounding to read – thanks so much for keeping us all informed. WOW.

  6. This is an amazing update, Trish. We praise God with you and will continue to keep the whole family in prayer as you go through this journey. You guys are all just amazing.

  7. Thank you for all of the information. It sounds like the little man is heading in the right direction and God is good! Love to you all, Kelly

  8. I say ditto to all of the above, especially Diana. WOW! Such a miracle. Rudy is so amazing and I am so grateful Rudy (and his entire family) is part of my life!

  9. Oh Praise God! I just now got to catch up on the whole adventure!
    God is amazing and gracious. Thank you for sharing your friendship and lives. I love the look on Rudy’s face in Westwood, “ok, can we go home now?”
    MUCH LOVE and continued prayers to you all!
    Go Rudy! 5mm is LOTS of mm! xoxo Michele

  10. Rudy’s courage simply amazes us. The beauty of love just transcends everyone in your family. It is a beautiful thing to see and watch as it works each and every day. We are all viewing how God works. Wow!!!
    Love you all—-
    Betty and Mike

  11. So happy that Rudy is progressing and that you have such an amazing team of specialists! Wow! It’s all mind-blowing and wonderful! Smother the little hero with a bunch of kisses….or get Livy to do it….for us 🙂
    Marlin and Grace

  12. Praising God with you! You and Rudy are a real life demonstration of God’s power and grace….we are “fearfully and wonderfully made.” God bless you all, much love Susan and Rob

  13. Rudy, I’m thankful that you are home and improving after your heart procedures…what an undertaking that was for such a little guy. Rest, rest and have fun with your siblings this coming week!
    See you in the Bear Club as soon as you get the “OK” from Mom & Dad 🙂 Luv, Christy & All Bears

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