There is Good News and Bad News

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     It’s well past 10pm and Rudy is finally resting back “home” in the CTICU after a very long day.   Rudy’s adventure in the cath lab lasted about 4 hours this afternoon.  He was fairly calm in the PACU right after his procedure but by the time he was transported to the ICU for overnight observation, he was worked up and irritated.  It took some methadone to give him some relief but that’s understandable as his last feed was 4am, his last meds were at 6am and he had a very full experience  in the cath lab.  He did great and I’m so proud of him.

     Rudy had a wonderful team with him today.  Dr. Dan and fellow Dr. Leigh along with our SB Cardiologist Dr. Harake conducted the heart cath.  They ended up gaining access through the groin and neck.  Dr. Judith Brill knows Rudy well from her rounds as one of the PICU attendings but she is also a fabulous anesthesiologist and we were blessed to have her caring for Rudy today in that capacity.  Because they went through the neck, Dr. Brill had to suture his trach in place as they needed to take his trach ties off and he came back with an IV in his forehead.   So Rudy has a number of tender spots this evening that, I’m sure, are pretty sore.   Dr. Brill was our full-service anesthesiologist today because in addition to her official duties, she removed a couple of chest stitches that were hanging around way too long AND she swapped out Rudy’s g-tube for a new and improved button mic-key with a less bulky, low-profile.  Her willingness to do that for us saves us a trip to the hospital in SB as the swap was a bit too involved to do in our GIs office.  Not to make it all about me BUT Dr. Brill sure helped make my life a little less complicated today and that’s really nice!  Ha ha   The plan is to watch Rudy closely tonight to make sure he rebounds from today safely and if all goes well, we should be allowed to go home late tomorrow afternoon. 

     There is much to process from today’s cath.  In general, I think we have reason to be encouraged.  As Rolf mentioned earlier, the team called for consent to do an angioplasty in the right pulmonary artery because they detected some narrowing of the artery.  They also coiled the right collateral artery which, I think,  means the artery was tied off reducing the overall blood flow to the lungs.  This will prove helpful at the time of the Glenn but will make Rudy look a little more blue in the short term.  Dr. Brian was consulted and given the information gathered in the cath lab and everyone is in agreement that as far as the heart goes, things are looking good.  Rudy hasn’t quite grown out of his shunt yet which means we don’t have to rush towards the Glenn.  In fact, if we can keep Rudy’s sats in the 70s, we could POSSIBLY wait until Rudy turns one before we do the Glenn!!!!  Waiting 2-4 months for the next open heart surgery would allow us valuable time to get Rudy fattened up and stronger. 

     As has always been the case with Rudy, however, we are facing a challenge unrelated to his heart defect.  Today’s findings also confirm that his lung function is still weakened and not what it should be.  He just isn’t strong enough to expand his lungs fully.  This is chronic for Rudy as he has battled this condition from birth but it doesn’t necessarily mean it will be a permanent problem.  It will take time, though, maybe even up to a couple of years so we need to be prepared for Rudy to be oxygen-dependent even after his Glenn.  For now, the team’s recommendation is to send Rudy home on a continuous oxygen supply.  The extra support will allow him to focus his energy on growing as opposed to breathing and it will help him sat in the 70s – a more preferable range while we wait for the Glenn.  Sending Rudy home on oxygen certainly isn’t what we hoped for out of this trip to UCLA but I’m all for giving Rudy what it takes to keep him comfortable and help him grow in preparation for his next surgery. 

     Rudy has proven himself strong and an overcomer on so many occasions.  I trust he will catch up and develop GREAT lung function in time.  Please join us in praying specifically for his lungs and muscle strength in his chest!!!   Tomorrow will also probably involve some more training in how to care for Rudy on oxygen so please pray that we won’t be delayed in going home due to logistics.  It looks like we’ll have to pack away our candles and stay clear of open flames in general for a season until Rudy gets past this bump!  ‘Just another little adjustment in the larger scheme of things.  As always, one day at a time…

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12 Responses to “There is Good News and Bad News”

  1. Diana Says:

    Thanks so very much for this detailed update at the end of a long, exhausting day for you and for Rudy. Wow. A lot to think about and process and be in prayer about. The thought of waiting 4 more months for major surgery is fantastic – so specific prayers for freedom from complications between now and then. All of these things you are dealing with are so terribly familiar to me from our son-in-law’s long-term health crises, but I’m just blown away that such a tiny person has to deal with such huge problems. You are right, he has done so very well through so very much. They’ll probably give you some small packs for the oxygen to make life more portable and it may make him dry/thirsty – which you probably already know. So, Lord…may the Wind of your Sweet Spirit blow through Rudy’s small body, strengthening those lungs and chest muscles. And give Trish the sleep of the blessed!

  2. Bonnie Lisama Says:

    Glad Rudy did well, and thrilled he gets to wait so long for his next surgery. It will be such a blessing to have him growing bigger and stronger first. Sweet dreams little friend, we are still praying for you and your sweet family too. Hugs and kisses from all the Lisama’s.

  3. Kathy Keller Says:

    Glad to hear Rudy did well and that you can wait a bit for the Glenn.

    Garrett was on o2 between his Norwood and Glenn and it really did take a load off his lungs and made him more comfortable. It made it a lot easier for him to eat and gain weight too. He wasn’t having to choose between sucking and breathing.

    Another poster mentioned the driness and thirtiness. Our oxygen compressor has an attachment that holds distilled water that humidifies the oxygen. It makes a huge difference for Garrett.

    Keeping Rudy and your family in our thoughts.

    Kathy Keller (Garrett’s mom 12, hlhs and friend of the Geylings from high school. 🙂 … and no Rolf did not come to school dressed in his Austrian garb…at least not that I saw. 🙂

  4. Dawn & Steve Bettencourt Says:

    Well overall things didn’t sound bad! If I’m not mistaken collaterals grow because the blood is looking for places to go so they push out like weeds…and NIck has well over 100 coils in his body at this point. Not too much to worry about, except that they are foreign bodies and could cause a fever in the next few days. But it sounds like Rudy was in good hands and you both made it through! I wish you a peaceful and speedy discharge…and ride home!

  5. amy fiorillo Says:

    I’m glad to hear that there is a possibility that Rudy can wait a little longer before the Glen. It all sounds like pretty good news. Even though the O2 wasn’t expected, I bet Rudy’s lungs will get nice and strong over the next few months / years. I will continue to prayfor your tough little guy!

  6. Dawn Bettencourt Says:

    /before we had Nick, I would have never imagined what I would learn about the heart and the miracles that could be done. Prayers for strength and good days to follow, Nick’s Grandma

  7. Allison & Mike Kenyon Says:

    Sounds like you and Rudy were well-attended to at UCLA yesterday. Will pray that Rudy heals up from all the pokes and prods he had, and that you will be able to go home. Will pray for those lungs and chest to improve and thrive soon!

  8. Pat Says:

    Thanks for all the information. It was nice to follow along during the day yesterday. I am praying for whatever it is that you need most at this point in your day, but especially for strength for Rudy and peace for the rest of y’all!

  9. Uncle Steve Says:

    Trish, thanks for the comprehensive update. So glad to hear this morning that everything went well in the cath lab. Sometimes its hard to interpret all the information as positive or negative. I appreciatte your ability to always put a constructive spin on the news. We’ll be praying for Rudy’s lungs and overall growth as you bulk him up over the next few months.

    We love you all!

  10. Colleen Says:

    Good Morning Geylings! Long day yesterday it sounds like! Good news all the way around! What’s a little oxygen given the possibe outcomes? ; ) Glad to hear you may be able to wait until fall to do Rudy’s Glenn, we’ll see you then. I love reading Rudy’s Beat and wish I could have made the trip next week for his dedication. Take care. Keep growing Rudy!

  11. Lisa and Chris Says:

    Hi Trish and Rolf,

    This does sound like positive news overall, and it’s great that you don’t have to stay there longer. And we rejoice that you’ll be able to put off the Glenn for awhile longer, and have some summer fun with the kids and Rudy at home! That’s wonderful. We are praying for Rudy to get big and strong…and we know that he will do that best at home surrounded by all the love of his family!

    You all are in our prayers! Go Rudy, GO!

  12. Heidi Says:

    Glad to hear the cath went well. It is nice to know you don’t have to rush to the next surgery. It will be good that his lungs don’t have to be overwhelmed by another surgery yet. Our Ethan had no choice but to get the Glenn a little early. I must say at least its done. . . but I feel like we were finally getting in the swing of things at home. Oxygen is easy but frustrating. I feel like all I did was stare at his sats all day though. He is oh so cute and sounds like a great fighter.
    Best of wishes and prayers-
    Heidi

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