three months from today
will be a heart-wrenching day
where's my time machine?
Everything is scheduled in Cincinnati. High-res chest CT on July 6th, bronchoscopy on the 7th, FEES swallow study on the 8th. If everything looks good, the surgeons are scheduled to do the laryngotracheoplasty on Monday, July 12th. A general surgeon will remove part of one of his ribs, ENT will graft the rib into Ike's airway, widening it to a normal-ish size.
There are so maybe ifs and unknowns to all of this. In order to have the LTP, Ike HAS to keep getting bigger (and he lost 3 ounces last week, so ugh). He HAS to stay healthy. He HAS to not be aspirating, even micro amounts. He HAS to have improvement in the bronchiectasis in his lungs. So many things.
We won't even know if he can get the reconstruction until the Friday before the surgery. We could very well be heading home on July 10th, knowing we have more time with the trach ahead of us.
But what if the tests all come back OK? What then? A rib graft in his trachea. 5-7 days in the PICU, intubated. Possibly another couple of weeks on the airway floor. More bronchs. Learning how to swallow and cough again. Learning how to eat again. Withdrawal from pain meds. A month or longer away from the wee one and the wee-er one.
But the result? The result is no more trach. The result is a relatively normal-sized airway that should cause no more problems, even during illness. He'll probably have to have a med-alert bracelet to warn emergency personnel that his airway is reconstructed, and tell them what his intubation tube size. He should not need supplemental oxygen when he's sick. He should not need nurses in the home. He should not need a mini-hospital in the living room.
I hate to even write these things. I work very hard on not looking into the future. If my horror of a pregnancy taught me anything, it was to only look a minute ahead. A day ahead. No further. So allowing myself to get these grand illusions of "what-ifs" is a little intoxicating. And terrifying.
What kind of mother wishes for her child to have a day long surgery that risks his life and puts him in intensive care for a week? That is a fucked up thing, you guys.
But we have our dates.
Now we just need to get there and make it happen.
What if it doesn't happen, though?
Shit. What if it does?
How awesome! Congratulations on your news.
A lot of ifs, but Ike has proven to be a strong little fighter.
We’re just at the beginning of our journey with our little one, but I quickly learned about not looking too far into the future. However, I’ve also learned to relish the good news when it comes. This is good news!
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Oh wow, I can’t imagine the conflicted feelings, Kari. I’m so excited for him (and you guys!) but wow, so many what ifs and so many caveats. You can be sure I’ll be praying hard for all of you, and I’ll add you guys to the prayer forum on GentleChristianMothers.com (unless you prefer that I don’t).
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Oh wow Kari. I can only wait and pray for the day when I can write those things. I know it’s hard to imagine and the thought of your child going through such an incredible ordeal, but I tell myself that it’s not fair to Hudson for us not to try the LTP. I am sooo praying for much success during these next few months!! Please keep me posted. I can only hope that we get to follow in Ike’s footsteps this time next year! I know the feeling…
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Brittany, I was talking to our Cincy ENT’s nurse about Hudson. I told her to keep an eye out for the cutest little dude ever. 🙂
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Kari, I don’t think that you wish for surgery, you wish for Ike to have a life without a trach. Surgery’s the only real way for him to get there. You guys are in my prayers.
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It will happen and he will be fine because he is a tough little dude. So glad to hear that the dates are set.
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Leave the looking ahead to the rest of us, who hope and pray for Ike all the time already. He’ll get there.
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I hope everything works out and the surgery goes on. My son had craniofacial reconstruction surgery at age 2+ and they removed part of his rib to use in filling voids in his head. Since then his rib has grown back. We also did 4 days in the hospital – 1 night in PICU and recovery went very smooth (although still scary). Just wanted you to know my experience in removing my son’s rib.
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Yay for getting the dates! This is very exciting and scary… but if anyone can pull all this off, it’s you guys. Seriously. Keep that household sick-free and focus on today. July will make it’s way here before you know it.
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I found myself holding my breath reading that post. Sending many baby fattening, germ fighting, anti-aspirating, bronchiemajigger improving vibes your way.
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I adore Ike, and am blessed to see his sweet face every day on the wall of the Milk Bank! He’s a fighter…and so are you. Thoughts & prayers to you guys. Keep us updated.
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Yeah! How awesome to have some hope ahead. If anyone deserves this, it’s you all.
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Yay! I don’t have anything to say that hasn’t already been said, so I’ll just send *hugs* and good thoughts your way.
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fantastic kari 🙂
and if it goes ahead? then it will be better than you even know.
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I was holding my breath reading this too. You guys, especially the little dude, will be in my thoughts these coming months. Such fear and uncertainty to live with . . . and hope, too. Can’t wait for this to be behind you all.
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Oh wow, I know a little bit of that feeling… happy/sad/scared/hopeful. I am sending loads of good thoughts, prayers and wishes your way. I imagine someday this will be a “Dang, remember THAT?” kind of story. Ike (in true Ike fashion) is gonna do great and thrive.
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