Guess who’s doing some laundry tonight?

Well.

After that whole brouhaha with the schmutz yesterday, we had prepared ourselves that this just wasn't going to be the right time. We were still holding out hope for today, though, because we are gluttons for punishment. Ha.

Even though the pulmo wasn't negative or discouraging yesterday, he was just very realistic and I think my husband and I both tend to lean towards the pessimistic side of things because then it's "easier" (actually, no it isn't) to hear bad news. The whole thing yesterday was confusing to me because Ike-a-saurus has been doing so much better. His lungs sounds great, he's off oxygen, he's active, healthy, etc. HOW can his lungs be worse? Ugh.

Fast forward to this morning. My husband and I were able to go into the induction room and hold Ike as they put him to sleep for the smorgasbord of 'scopies. It's always such a strange feeling to leave your unconscious baby and wheel an empty stroller down the hall and out into the waiting room. (Well, the stroller is full of crap, but you know what I mean). So we sat, emptily, drinking warm drinks and waiting to hear from the docs. We were told 70 minutes at least, so I thought I had plenty of time to go to the bathroom. Ha ha, right? As soon as I was in there, I hear Ike's name over the loudspeaker and I had to come busting out without even washing my hands. (Don't worry – there's hand sanitizer every half a foot around here).

The docs were back so quickly I was afraid something was wrong, but then there was the Super Fancy ENT (who sounds a little like a British Kermit the Frog) and all he said was, "We're a go for Wednesday, yes?" And I was like, "Yes?" and he said, "I'll just take a little bit of rib and move it up here" and he gestured to his neck "and that will be that". Then he left and his fellow explained that everything looked great and repairable.

Of course, my husband and I were all omgwtfbbq!!11!! what about the pulmonologist? And that's when he walked in with this huge grin. He sat down and showed us pictures, that to me look just like the pictures of puffer fish insides I saw on the Discovery Channel last night. He said things looked WAY better than that bastard CT showed yesterday and that Ike seems to be in a good place to have the surgery right now.

(Side note: have I told you about the pulmo's ink? I don't think I have. He has the brightest, most colorful, pretty tattoos all the way up and around both forearms. The whole time he was talking to us, I was staring at his arms trying to figure out what the pictures were of. Not puffer fishes or lungs, in case you were wondering.)

Anyway, he said, there are several things that still make him nervous, the main one being Ike's tendency to get atelectasis very easily. So they are going to try to use less sedative when he comes out of surgery, and for the following week. This will entail us trying to talk to Ike and soothe him and keep him still and calm while he's intubated and restrained (um, yikes). He will be able to move enough to help keep the junk in his chest moving around, but it is critical that he not mess with the endotracheal tube that will be in his nose, going down into his lungs. So, yeah, tricky.

All this to say, we are on for the surgery next Wednesday. Ike is scheduled for a single-stage laryngotracheoplasty with an anterior graft. It will be a 4-6 hour surgery and he will spend the next week or so in PICU, sedated and intubated. Then, if things look OK, they'll pull the tube and send us to the respiratory floor to learn to eat and cough and all that fun stuff. That might be another week or two. Then we'll be released locally (like captured sea turtles. Ohioan sea turtles.) for another week or so, and if Ike's airway seems stable, we'll be allowed to go home. And then we'll be back in anywhere from 2-6 weeks for another bronch, etc.

Whew.

As I'm typing all of this out, I realize that even though this week has been stressful and planning the trip was stressful, the really stressful, scary part hasn't even started yet. It is such a bizarre feeling to wish for your child to have major, frightening surgery. What kind of crazy person would do that? But here we are. We have a scary, complicated month ahead of us that's for sure, and we're away from our friends and family, which is really hard. I miss the wee one and the wee-er one FIERCELY right now and we haven't even been gone a week. How will we last up here for such a long time?

Of course, I worry as I type this that I am jinxing everything, that Ike will catch a cold over the next couple of days or spike a fever or drop his sats (which he actually just did right this very second) or any number of things that could postpone the surgery. But then I also worry about the surgery itself. I mean, this is a big fucking deal. My baby's airway – the part of his body that allows him to breathe – has to be recreated, and then it has to be stable and healthy. And last forever.

It's all just a terrifying, exciting whirlwind. And tomorrow we have still more tests. But then we rest for a few days. Maybe we'll take in a Reds game. We will certainly eat ice cream and treat Ike like a king.

In the meantime, I better wash some clothes and maybe take a xanax.

Holy shit, you guys. The Rocky shirt worked!

Photo(11)

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26 thoughts on “Guess who’s doing some laundry tonight?

  1. Oh Kari….I have tears in my eyes and goosebumps on my arms!!! This is amazing and scary and unknown and…just wow…no more words, just *HUGS*.

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  2. Awesome!terrifying!totallyawesome! Here’s hoping the hard parts aren’t so hard. I’m so excited for y’all. I hope and pray that sometime we’ll have our “we’re a go!” news too. I’ll look to you for inspiration. Best of luck and congrats!

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  3. HSWTFOMG!!!!!!!!!!!!!!!!!!!!!!!!!!AMAZING – Simply AMAZING. I knew his smile in that pic was forshadowing happiness ahead. Yay for all of you and for Ike’s operation to come.

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  4. I’ve been praying for you and Ike for the past year or so, and I will be praying extra hard in the next few weeks. I’m so pleased the surgery is a go — and yes, I know exactly what you mean about the weirdness of wishing for a major frightening surgery, because I have wished that for Beadboy1. Good luck, and like I said, I’ll be praying my ass off for you all.

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  5. Holy crap! YIPPEE!!! and lots of good wishes towards Ike continuing to stay steady and for Ike to be as Herculean as he’s been through all that is to come. And he is one lucky dude to have such an incredible family.

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  6. Hooray!!! Go Ikeasaurus!!!
    Reading the part about less sedation and the need to keep him comforted and calm post-op really, really,REALLY tugged at my heart, making me so wish I could be there to offer my help. I’ll for sure be there in spirit.
    Yea!!! I’m excited and very confident for y’all now!!

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  7. I have been following your blog for… um, maybe a year and a half now? Ever since the New York Times mentioned Ike in an article. I have kept reading because I’m rooting for Ike’s health to improve. I have never posted before, but I wanted to let you know that I am hoping, praying, and crossing all my fingers that his surgery goes great!!!

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  8. I’m a former Austinite, and have followed your blog for a long time. I’ve been in that place where I’m eager for my baby to have a scary surgery, so I feel your WTF mixture of emotions and thoughts. But your ability to hold it all, your equanimity and humor and honesty about it all is a huge inspiration just for how to live through the scary uncertainties of LIFE. Thinking intensely of Ike and your family over here in Brooklyn.

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  9. Wow! I don’t think it gets more exciting/scary/awesome/nerve-wracking than that! I have so much anticipation for Ike, you, and your whole family. I will turn on every positive thought and vibe I have in my body next Wednesday and aim them at Ohio!

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  10. I’m heaving a sigh of relief while my heart is racing at the prospect of next Wednesday. As always, sending lots of well wishes Ike’s way.

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  11. I am wishing you the best with many prayers, good thoughts and karma coming your way. I do know how you feel so take comfort in that there have been many before you with the same conflicting thoughts and wishes. I truly hope and pray that all goes well! And take care of yourselves too! You have lots ahead of you.

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  12. YAHOOO!!!! I was so hoping to read a great update. I know it is so hard to be away from your other kids but this is what you’ve been working so hard to get to. I’ll keep all my positive thoughts that everything is on track for the surgery.
    When my son had to go through craniofacial reconstruction the surgery got delayed twice and I thought I’d go crazy from the stress, trying to keep my son healthy and it was nothing as serious as what Ike is dealing with or the delay you’ve had.
    Keep posting. I’m reading every update!

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  13. Good thoughts and energy from Philadelphia. I can’t believe this is finally going to happen. After everything you all have been through, you deserve the happy ending!

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  14. Wow–scary and exciting! I hope that Dr. British Kermit (very vivid description!) makes everything work great and that everything goes really smoothly. Thanks for all the updates!

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  15. Just read this on Sunday, have been away from a computer and am so excited and scared and thankful and hopeful. more wishes for corns of all persuasions…kermicorns(?) too to get you all through the coming weeks.
    Hugs from the far north.

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