3:45p.m. Bounce Back day

Jack is still with us.  We’re sitting with him in his new and improved PICU room.  We are celebrating his presence and in some way, mourning too.  Dr. Piatt informed us that the nerves related to swallowing could not be saved.  They were removed entirely.  While we had hoped that Jack would be able to regain some of the swallowing function with time and therapies, that is now out of his reach.  He will permanently need a feeding tube and a trachea tube.  That is now a certainty.  His hearing in his right ear is currently gone, though he may be able to gain some hearing back again.  Dr. Piatt seemed particularly regretful when he reported that the facial nerve has likewise been damaged.  His right side will “look funny”.  

Let me reiterate.  Jack is still with us.  He is a lucky, strong and resilient little boy.  The tumor may have gotten some things but it did NOT get Jack, though it could have.  Every parent wants the smooth road for their child, and we’re mourning the difficulties ahead.  But there is a road to travel, thankfully, and we’ll make it a joyful one- singing the Bonanza theme song down it all the way.  

Please keep those lights burning for Jack tonight, everyone.  He has a rough road of recovery ahead over the next week, and we have to pray that he stays stable in these delicate post-operative hours.  

Let’s look at all those lights you have been burning and think of them as birthday candles.  In our family from now on Feb 27th is going to be Bounce Back day.   It’s the first day of the rest of Jack’s life, and my God, we are so grateful.  

Good job, Jack!

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I’ll update again tomorrow.  Thank you all for sharing this journey.  It’s what got us through the long hours of waiting.

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23 thoughts on “3:45p.m. Bounce Back day

  1. tmel2014

    Jack will meet every challenge in life head on because he has a wonderful and amazing family that will show him how to do it. He could not be in better hands.

  2. Patty & Paul Kobrin

    We will pray for him and soon Bounce back Jack will be Happy Jack he is a fighter.
    I will send him strength and love to help him with his fight

  3. Good fighting little Jack- yes you took some heavy hits and have some “battle scars” but you won the war! Now you just need to turn your focus to healing. I am so relieved to hear Jack made it through his major surgery! Since I know this next week(s) will be extremely hard on you and your family I will continue to faithfully pray! I’m also going to continue sending you all my love, strength, stamina, positivity, comfort and support that I can muster. I am asking all of my friends to do the same too! Remember, any/every one of you can ask me for anything, anytime and I’ll move mountains to get it done! A big thanks to God and the angels who have been watching over you all from the start!! I will continue to look for more update first thing every morning and throughout the entire day! May God continue to bless you Bounce Back Jack and your family!

    ☆¸.✿¸.•°*”˜ƸӜƷ˜”*°•.•.¸ღ¸☆´ ¸.✿´´¯`•.¸¸. ི♥ྀ.
    (¯`v´¯) ….♥ F O R E V E R ♥
    `*.¸.*.♥.✿´´¯`•.¸⁀°
    ☼*¨*• ˚ IN ♥ MY ♥ HEART ♥

  4. Meghann

    Just wanted to put something out there for those who are following the blog who do not know this family personally. At the risk of stating the obvious, this little guy has a huge leg up on any fully-abled person out there just in the fact that he has Meg and John for parents. They have been wonderful advocates for their son this past week and a half and that will no doubt continue. Anyone who’s been lucky enough to see them all in action would tell you that the love and joy Meg and John share with their sons is awesome, in the truest sense of the word. Jack and Sam are two very lucky boys.

  5. Jill and Mike

    Round One – Jack wins! Tumor loses!
    Round Two – Jack will win again and again and again. He beat the odds this time and with his loving family and adoring fan club he will overcome the challenges that lie ahead.
    Wishing you peace and good sleep. Continue on one day at a time and keep asking for whatever you think we can give.
    Love,
    Jill and Mike and Kate and Em

  6. Darlene

    I am so glad that Jack made it through the surgery. I am sorry that he will have some pretty major challenges in his future, but with you as his Mom and so many people in his corner, I believe Jack will adapt and learn to love his life. Much of our enjoyment of life comes from within, and it is obvious that he has a strong will to live. God bless you and your family. I will continue to pray for his recovery.

  7. David L. Langenberg

    Adequate words fail me, but I am so glad Jack made it through the major surgery and I hope his recovery will go well. He’s got great parents and a wide circle of concerned friends so I think he will be able to face any challenges as he continues to grow.

  8. Kathy

    So glad that Jack made it through and that we will celebrate Bounce Back Jack Day with him for many years to come! Now he can begin to heal and grow! He has a wonderful family to come home to and learn all about the beautiful world you will share with him.

  9. Michelle Lin

    I’m so glad that jack is happy with you and your family. I wish you luck on his recovery and his future. Great job Jack!!!

  10. Melissa McElroy-Elve

    So relieved that the first big step has been taken. Bounce Back Day is a celebration of all of your resiliency. Glad you are honoring the mourning too. It is a big process. Keeping all of you in my thoughts.

  11. John Green

    Meg and John,
    I am so happy for you and your family.
    The lights will remain.
    Our hopes will remain.
    Our prayers will remain.
    Our offers for assistance will remain. Our best wishes will remain.
    February 27th will remain as
    Bounce Back Jack day.

  12. Ruth Gaffey

    Jack is with us tonight and we are so very grateful. Thanks to the wonderful doctors and nurses and all those who are involved in his care.
    I think Jack looks better already to be honest and I hope that continues as he goes through this scary recovery period.
    We are of course grieving in a sense as we realize Jacks life will have more challenges than we would wish for a child but the world is a beautiful place
    filled with light and love, goodness and joy and Jack will now be able to experience those things.
    All of Jack’s family and friends will make sure that happens.
    X Nana and Da

  13. Sarah

    So happy to here Jack made it through surgery. Stay strong. The road may not be what you expected, but it’s a road to follow nonetheless. So don’t regret what could have been, embrace what still can be. You have an army of support behind you for the long journey ahead, ready to help in anyway possible.

  14. Megan Oakleaf

    I’m so glad Jack made it through the surgery and we’ll keep our candle lit going forward as he continued to recover.

    I hate hate hate that the nerves couldn’t be saved. But…I have great belief in medical advances, and I suspect that the field will produce ways of mitigating the swallowing and feeding challenges in the future in ways we can’t fathom today. As you said, Jack now gets to see that future. And he has a strong and smart mommy to be by his side, who will be on the lookout for every opportunity to make things easier for him.

    Please know that Steven, Nate, and I are here for you all, and when you know what help you need, we’re ready to give it.

  15. Brian Vilag

    Congratulations on getting your little guy back. I’ve been following your journey with trepidation and while there is hard work ahead, I’m breathing a little easier. You needn’t mourn his uniqueness, he’ll figure it out and become the awesome Grotti he was always going to be.

    If you keep updating the blog we’ll keep reading, but no matter what we’ll be rooting for Jack and we’ll be there if you need us.

    Much love.

    Brian

    1. “You needn’t mourn his uniqueness”. Thanks, Brian. Thank you so much. I plan to keep the blog going for as long as I need it… and that will probably be a long, long time.

    2. That is a lovely way to put it. You are absolutely right. We each have unique challenges and talents. Some more obvious than others. Jack is going to have a happy life and will obviously always know he is loved and appreciated.
      Who knows what advances the future may bring in terms of medical science. 43 years ago doctors told my mother that I likely wouldn’t live past the age of 18. I just had my 50th birthday. 10 years ago I probably would not have survived the cancer I had in 2012. Now I am cancer free. This is all because of new medical treatments and medications. So yeah – I think Jack’s future is going to be awesome. And he is going to LIVE it to the fullest.
      Sorry for my momentary wee bit of gloom earlier. Full speed ahead to an awesome life! (Pumps fists over head …)

  16. John J. Oxford

    I understand where you are at through all of this experience. I have two birthdays myself. We will continue to pray for all of you. Your strength and John’s will take Jack to great heights. Thank the Lord. J

  17. Bob Totz

    Thank God Jack made it through surgery. I’m so sorry to hear of the nerve damage, but if ever there
    was a child with great parents, it’s Bounce Back Jack! We will continue to pray for his recovery. Love and blessings to all of you in Delaware with Jack today.

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