Oh, lungs. Really?

I keep writing this and my phone keeps eating it. Here we go, third try.
Here’s what we learned today:
1) Ike will not outgrow the stenosis. It is a grade 3 stenosis with lateral shelving. His airway is in the shape of a very narrow hourglass. It’s definitely surgical. This sounds bad, but it’s not. This is what we suspected all along and we are thrilled the fancypants Cinci doctors are on board.
2) Ike has lung damage. Both from being a preemie and from possible chronic aspirations. Both of these things are news to us, and not welcome news.
3) his airway can’t be repaired until we figure out what is damaging his lungs. We have to fix whatever that is and then give his lungs time to heal. This means we will have to come back here and do all of this again before he can have the reconstruction. We don’t know when that will be.
4) tomorrow morning, he is having yet another swallow test to see what exactly he’s aspirating that’s causing the lung damage. Saliva? Food? Reflux?
5) next week the cinci docs will call us with more info as test results come in. Possibly then we’ll get a plan of action.
6) Ike is OK tonight. His arms are boarded at the elbows to prevent him from removing his impedance probe, so he’s not too happy about that.
7) tired
8) encouraged and discouraged at the same time. Our road just got a little twistier, our journey a little longer. It’s never as easy as you want it to be. Oh, lungs. Really?

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17 thoughts on “Oh, lungs. Really?

  1. I can’t believe he is smiling after all that. I would not be smiling if all that had been done to me today. He is a superstar. I hope your answers keep coming and your plan of action gets set fast.

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  2. And still a smile on his beautiful face after all that business today. He’s incredible. You guys are rockstars. 3 days down.

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  3. Information is a great start. You’re well ahead of where you were few days ago. I hope a course of action will be ready to implement SOON!
    Wishing your whole family every blessing

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  4. It’s good to know and have a plan. I hope the issue with the lungs is figured out soon and they heal perfectly. Good luck to all of you!

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  5. Every time I see a picture of your little guy, I feel tiny little tugs on my heartsrings. That smile… Hope you can get some rest tonight. It sounds like today was a long day.

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  6. Ike clearly knows he’s loved and wants you to relax. Such a sweet boy. Love to all of you….hope Daddy’s hangin’ in there, too.

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  7. He’s such a cutie patootie! I just love the pictures of him, he melts me! And try to think this way: it is fixable!! This is much better news than what would have been given if this had happen back when we were all that age! Hugs to you and the family, we are all praying for you guys (and for your airplane ride home!)

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  8. News is better than no news. And fixable news…well fixable news comes close to awesome. Not as awesome as that picture of Ike, but still, pretty awesome.

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  9. And he’s still smiling! Does a mother go to hell for saying another child is cuter than hers? I’m glad for the news you’ve gotten so far. With something to grab on, we can work with it. I’m sending you a virtual foot rub, hope you can feel it.

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  10. He has the BEST smile! (I know…what an original comment, eh?)
    Hope they are able to figure out what is damaging the little guy’s lungs.
    Does the hospital cafeteria sell beer?

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  11. Ike is a freaking miracle, if I’d been through all the testing he’s done this week I sincerely doubt I’d be able to dredge up a raised eyebrow much less a smile! That child is an amazement. You are doing a wonderful job staying strong through all of this…I know this is a bump in the road as much as it is a major miracle to have information and agreement with the docs. Still praying for all of you.

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  12. He’s a rockstar. And you are a rockstar for even having the ability to pull it together, take an amazing picture, and post an update. you’re running on steam mama. Wishing the absolute best for all of you.

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  13. Poor little sweetpea–but look at his spirit!!! He’s a strong one–you all are. Glad you have answers, sorry it will be so hard.

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  14. And he’s still smiling and happy and a beautiful little soul. For all he’s gone through & still faces, Ike is the embodiment of courage, resilience and tenacity. And so are you!

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