News from Aspengren/Shotts Household

I have a bit of news that I need to share. Jen and I brought our seven-month-old Griffin in on Friday for a procedure to look into his throat. He has had croup and has suffered a lingering lack of breath the last few weeks.

They discovered that he has congenital subglottic stenosis— essentially, he is rapidly outgrowing his windpipe. They are recommending surgery and suggesting we do it soon, as his windpipe is the size of a preemie, which may result in an emergency airway restriction. So we need to avoid that, and hope to avoid a tracheotomy.

From what we understand so far, they will take tissue from his ribcage and reconstruct a larger airway for him. Then, he’ll need to be sedated for five days and stay in the ICU. Then he will need up to two to three weeks for recovery, as he rebuilds strength and muscle after being under anaesthesia for so long. So we’re expecting to be in the hospital for most of November.

We’re letting this news sink in and also feeling grateful that we live in a time and a place where this is “fixable” and he can go on to lead a normal life. We have a lot to be grateful for, and we’re hopeful.

We do not yet know when they need to perform the surgery, but will be talking with the surgeon on Monday. He suggested “sooner rather than later.” The surgery will be done at Children’s Hospital, and we feel we’re in the best medical hands we can be. They have performed this surgery over 500 times, we’re told, and in Griffin’s case, success rate is high.

Thanks for any good thoughts you can give us. I will report in as we know more.

Jeff

8 Responses to “News from Aspengren/Shotts Household”

  1. Jeff, so sorry to hear about this development with Griffin. It’s got to be a strange mix of emotions — grateful that medical technology can help but wary that you even have to experience the “help” at all. We’re thinking of you guys and praying for your family here in KC. We would love to do anything you need, just call upon us and we’ll step up. We’d go to the ends of the earth, let alone the ends of the Twin Cities, for you guys.

    Keep us posted, I know you’ve probably got a lot to think about, but we’re also free anytime to talk via phone with you or Jen.

  2. Thanks so much, Toby. Hope you and yours are doing well.

    Griffin’s surgery is scheduled for early morning, November 14. So we have two weeks to prepare for quite a chunk of time in the hospital, the two or three weeks following that. The surgery itself is four hours.

    We’re finding out as much as we can, but also just trying for some normalcy right now. We’re setting up a Caring Bridge site, and will let you all know when that is up and available.

  3. I’m so sorry to hear this, Jeff. You and Jen must be so worried, but I’m so glad they caught it. It sounds like a quite a grueling recovery for such a little guy, but how wonderful that the success rate is so high.

    Healing thoughts to young Griffin. We love you guys and will keep you in our thoughts.

  4. What a blessing that this was diagnosed and what a blessing that you have a specialist nearby. But I know it will be difficult feel grateful until you have your whole family happy, healthy, and home.

    We’ll be watching for more info on the Caring Bridge site. You’ll be in our thoughts every day. Now more than ever, so sorry we live so far away.

  5. Thanks so much, Liz and J. E. More soon, but feels for now like a wait.

    Hope you are all well. It was fun to have my parents here for a bit, and they mentioned they saw you in Lindsborg! How nice. Wish I could have been there as well.

  6. Hope this comes through:

    Dear Friends and Family,

    As some of you have heard, Griffin was recently diagnosed with a rare-but-fixable condition called congenital subglottic stenosis. He is rapidly outgrowing his main airway.

    We’ve created a caring bridge site to keep everyone posted on his condition as we move through surgery and recovery. The link is below.

    We’re so grateful to have such a fantastic community of support around us. Thanks to each of you for your positive thoughts and prayers for our sweet little boy.

    Love,
    Jen and Jeff
    Visit online
    Find Griffin’s site at http://www.caringbridge.org/visit/griffinshotts .

    Visit on mobile
    Find Griffin’s site at m.caringbridge.org/visit/griffinshotts . Or, enter griffinshotts on your CaringBridge app for iPhone or Android.

    CaringBridge is a free, nonprofit web service that connects people experiencing a significant health challenge to their family and friends, making each health journey easier.

    CaringBridge® : 1715 Yankee Doodle Road, Suite 301 : Eagan, MN 55121 : http://www.CaringBridge.org

  7. Thanks so much for setting this up. I’ll be downloading the app so as to carry you all with me.

  8. Jeff,
    Just seeing this now. So sorry to hear about this, but glad like others have expressed that there is a likely solution. But, yes, the news will mean anxiety and a difficult recovery. Sara and I will pray for you guys so however you want to interpret that. I know Jen’s family is close too but we’re not that far and if there is anything we can do, let me know.
    Ned

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