Not the numbers we hoped for

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We just met up with Rudy in the PACU after a long conference with Dr. Dan and Dr. Harake. Unfortunately both numbers we had hoped to see change did not. If anything they got worse. The heart looks good and strong but the chronic lung disease is our main issue.

The team will conference next week to see if there are any steps they want to take. We’ll give more detail later but what’s assuredly not going to change is that Rudy is not a good candidate for the Glenn due to his pulmonary issues.

Sorry it isn’t better news. We’re here with Rudy now. He was a bit fussy but now he’s slowly waking up. Thanks for praying and walking with us.

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30 Responses to “Not the numbers we hoped for”

  1. Sloan Says:

    Bless you dear ones…

  2. Rory Says:

    As disappointing as this is, I am thankful they don’t want to “chance” it. So amybe our prayers were answered.

  3. kelly Says:

    So sorry to hear that. I love you all and will continue to pray for the next best step.

  4. Kaitlin Says:

    Oh no… :,(

  5. Liz Says:

    Oh, I am so sorry. God’s peace as you process the news and try to discern “what’s next.”

  6. kim Says:

    ugh.

  7. Joe Z Says:

    Sorry friends, we’ll be praying!

  8. Rebecca Wilson Says:

    I’m so very sad but I won’t lose hope for Rudy…

  9. Amy Fiorillo Says:

    I know this wasn’t the news that you were looking for today. I am keeping the faith that the doctors will come up with a plan to keep Rudy in a good place and eventually get him to an ever healthier place.
    Hugs!

  10. Grandma Jo Says:

    God has His plan mapped out. My prayer is that we can all trust Him and know that Rudy’s life has a purpose beyond our strongest desires. Who among us can doubt the impact this sweet little guy has made on so many people. Your family has been such a witness and will continue to be. Breathe deeply…I pray for your peace and continued health as supurb caregivers. Love, Mama

  11. Deb Swirczynski Says:

    God is good. All the time, God is good.

  12. Andrea Says:

    Not the best news, but God has some great things in store for that miracle boy!! Have they said whether transplant is a good option??

    We’ll be praying that the doctors are guided in their decisions as they conference about the next step for Rudy!

  13. Grace Says:

    I am so sorry….praying

  14. Oma+Opa Says:

    Send you more love, extra hugs and some deep breaths for Rudy.
    And we keep praying for your peace and guidance for the team.

  15. Tanya Says:

    Keeping all of you in my prayers, always!!! It is hard sometimes to comprehend what God’s plans are, but he knows every inch of Rudy and knew even before Rudy was born!! Hugs and lots of love! xoxoxo!

  16. Emily/Winny Says:

    Praying for stronger days ahead for Rudy and divine guidance for his doctors! You have a great team of physicians and care givers, they will work hard to find a way to make Rudy better!

  17. Diana Says:

    Oh, sweet friends – so sorry for your disappointment and that wondering anxious place where you find yourselves right now. May peace descend, even as the cloud of Mystery (and powerful Encouragement!) descended on Jesus at the moment of transfiguration before he headed down that hill towards another one outside the city gates. Peace, hope, trust. And somewhere in there – deep thanksgiving for the strength of Rudy’s half-heart, for the dear little person he is becoming, for the magnificent care you all have received everywhere you’ve been over these last two years. AND certainty that God is in the middle of all of this – the good stuff and the hard, horrible stuff. The coaster car is on hold right now, right at the top of a pretty steep-lookin’ old hill. We’re riding it all with you. Love and prayers.

  18. Kathy Says:

    I am so sorry that you got this news. I’m with “Grandma Jo”…as hard as it is accept this sometimes. Keeping you all in my thoughts and prayers.

  19. Uncle Steve Says:

    Bummer!!! But…..Rudy has taken us on a wild ride many times. Looks like we’re in for another! Know that you are bathed in so many, many prayers! You are loved and loved and loved! And LOVED!

  20. Susan Says:

    We continue to lift up Rudy to the great physician. Even though we cannot see what is in the future, we have confidence that Rudy is in God’s embrace. Great is Thy faithfulness. We love you!

  21. susan Says:

    We are praying with you guys! So sorry it wasn’t great news…hoping in the Hope Giver with you…no words.

  22. Lisa Says:

    You all are in our prayers. Rudy is blessed to have such wonderful parents and wonderful siblings. I know God’s grace is with each one of you in ways that we can’t imagine. I pray that today each of you feel His mighty love and peace that cannot be explained. We love you.

  23. Mark D. Says:

    Praying for you and your family. God be with you.

  24. The Mannings Says:

    We’re so sorry for this news for all of you. We’re praying that the doctors will be able to come up with a plan to help Rudy. Sending you hugs and prayers from CT.

  25. Lisa Says:

    My heart is heavy tonight with this news. I can only imagine how exhausted you three are. This certainly is NOT the news you were hoping to hear. We will continue to pray, pray, pray…and I’m with Steve…you are loved, and loved, and loved! You’ve got such a great team down there, let’s pray for wisdom for all of them.

    May you sense God’s loving arms around you–for surely they are there at a time like this. Love you dear friends.

  26. Lisa Richards Says:

    Feeling the heavy weight of this news and hoping all of us in your circle can help you carry enough of the load so that you continue to lead the way.

  27. jen and joe Says:

    Sorry for the disappointment of the #s. Rudy is so strong and looks so good. Will keep praying that those #s catch up to the rest of him. We love you!

  28. Bonnie Lisama Says:

    Always praying for your sweet boy. We know He is in control and keeping the faith that Rudy will follow His plan. Hugs XXOO

  29. Kenon Says:

    So sorry to hear this challenging news… how are you?

  30. Sharon Byrne Says:

    Bless you and Rudy – my prayers are with you. What a precious gift you’ve got in him. I can’t find the words to express how I feel. I’ve often felt my child was the one person on this planet I would die on the spot for, do anything for, so she’d never suffer. Feeling that way, I can only imagine what you’re going through, but you walk this path with such grace and tenacity. Hugs to you all!

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