Ring ring

So guess who called today? It took leaving some grouchy messages, but finally, finally, we got the call from the Cincinnati folks.

Long agonizing story short: he needs to get to 22 pounds (10 kilos) in the next 6 months or so (he's at 14 right now). He needs to stay healthy this winter – no lung damage, no aspirating. If we can get him bigger and keep his lungs healthy, Ike-a-saurus can have the laryngotracheoplasty (with an anterior graft) sometime this spring. They'll take out part of one of his ribs and use it to reconstruct his airway, and we'll be up there in Cinci for quite a long time while he recovers. I am desperately wishing for the surgery and desperately dreading it. Very confusing.

They are hesitant to do the surgery now, while he is so small for his age, because you can't put a giant airway into a small dude. So, if he's too small when they do they surgery, and then gets a lot bigger, his airway wouldn't necessarily catch up. Then the awful possibility of being re-trached comes into play.

For the next several months we're going to closely monitor his lungs and do our very best to fatten him up. Then, sometime in the spring, we go back up to Cincinnati, repeat a lot of the tests we just had done, and keep our fingers crossed that everything is a go for reconstruction.

This is going to be a daunting winter of scary viral threats: flu and RSV and nasty random things. I can see it looming in the distance. I literally hold my breath when I think about it. It makes my hands shake.

We just need a hell of a lot of milkshakes, a baby-sized gas mask, and some good luck, right? Too much to ask for? I guess we'll find out.

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14 thoughts on “Ring ring

  1. I can’t even imagine the ambivalence you’ve got going on right now. Thinking about this winter gives *me* butterflies, and neither of my kids have a trach.
    Ike can do it! He’s the most unbelievable badass I’ve ever seen!

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  2. You might check with Ike’s ped about high calorie formulas Eric is on Nutren 1.0 with has 1 cal per mil, they have highr calorie formulas too. It is a lot easier than cramming calories down.

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  3. I’m sure he’s still on Neosure or something like that. I just wish I could make him some biscuits and gravy everyday with it, along with a cheeseburger or two. You guys can do it. There’s a plan, and now in Tim Gunn’s miracle words, it’s time to “make it work.” If any family can make it work, it’s you guys.

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  4. I read your blog every day and I just needed to tell you today that I pray for Ike and wish for him and hope for him and laugh for his triumphs and cry when he has a set back. Weird for a stranger to care so much, but I wanted to let you know.

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  5. What would happen if he didn’t gain enough this year, or if he got sick? Would there be any advantage to waiting longer for the surgery?

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  6. In the interest of keeping germs at bay, would it be possible to homeschool the wee one so he’s not exposed to so many kids and all their germs and then bringing them home? I’m a homeschooling fanatic, so I’d be happy to help you find a laid-back curriculum to use if you wanted to outsource the research on that option. 🙂

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  7. Isn’t he eligible for Synogis shots? I know they are crazy expensive. I hope your insurance covers some of it. We are so fortunate with Tricare to have it covered when our guy needed them. I get angry that the manufacturer makes them so unaffordable that kids get sick every year!

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  8. 14lbs to 22lbs in 6 months…wow.
    we only just made it to 21lbs at the age of 2.5 years when we got our surgery…
    i really really hope ike eats all the fattening stuff in the next few months!

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  9. You can do it! My daughter was scheduled for the same surgery at 19mos. Postponed to 21 mos due to illness but she was and is tiny. I packed on 4 lbs in a month prior to surgery with Pediasure, Carnation Instant breakfast and Duocal. It CAN be done!

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  10. Come on big, fat baby!! Go away freaking germs! I’d be happy to send you a year’s supply of Purell and maybe set up a fumigation station outside your house.

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