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?