We have our dates AGAIN. In a TIMEWARP.

Hey, so remember how I posted that long thing about finally getting our Cincy dates for Ike-a-saurus and how I was all in a tizzy about it and blah blah [insert freak out post here]?


Well. I got a call this week that the surgeon is now unavailable for the July dates. I actually laughed when the scheduler told me this, because, of course the surgeon is unavailable. Isn't that what ALWAYS happens when you talk about something on your blog and tell all your friends and ask people to send good thoughts out into the ether?

You jinx the ever-loving shit out of things.

So even though I should have been all, "Oh, DAMN, WHAT?!" I was just, "Of course he's unavailable. Ha Ha. Sorry, my fault."

The thing is, though, they managed to get us rescheduled. For the first week of June.


This means we leave in FIVE WEEKS.


I spent much of yesterday panic attacking all over the place. Going up there in June means losing an entire month of weight gain, which is pretty critical. It means I have to start getting travel plans planned. It means the wee one will have to miss the last few days of school. It also means my husband and Ike and I will be out of town for the wee one's 8th birthday. Mom fail. We will also miss the kick ass Star Wars extravaganza that we bought tickets for ages ago. It's a surprise birthday present for the wee one. I'm sure the grandparents can take the kids to the Star Wars thing, and I know trachs trump live Star Wars concerts, but still. Sigh.


Five weeks. We could get there and have to turn around and come right home. Or we could get there and have epic surgery, get the trach out and then come home. Or one of a million other less desirable things could happen.

Plane tickets, hotel, unpaid leave, finishing a book manuscript, figuring out a plan for the wee one and the wee-er one, not FLIPPING OUT. Suddenly, everything has to happen now now now.

Five weeks.


The Excuse that Kari Built

Why was I speeding, officer? Because I am late for my psychotherapy appointment.

Why am I late for my psychotherapy appointment? Because I spent too long in the shower trying to psych (haha) myself to actually go to the appointment.

Why was I in the shower in the middle of the afternoon? Because I got up too late to take a shower this morning and I had to rush to get my daughter to school on time.

Why did I get up too late? Because my baby was up crying and I wanted to help his nurse soothe him.

Why does my baby have a nurse? Because he has a tracheostomy.

Why does he have a trach? Because his airway is too small for him to breathe.

Why am I making that weird air-sucking noise? Because you have just triggered the PTSD for which I was going to the psychotherapy appointment that I was late for because of spending too long in the shower trying to psych (haha) myself up to actually go to. The shower I was taking because I got up too late to take one in the morning, because I was up with my baby and his nurse.

Also, my registration is expired by two months. I have a good excuse for that, too, if you're interested.

You're not?

Just a warning this time?

Thanks, officer.

You have a nice day, too.

We got our dates

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?

On Sundays…

Sunday or Monday
you have to pick a fav'rite
neither doesn't count

On Sundays, while I'm staving off the inevitable Impending Sense of Doom for the week to come, I often have a few minutes of pure, unbridled optimism. I think, "I am going to cook a balanced meal every night for dinner this week!" and "I am going to start a regimen of sit-ups and push-ups and walking around the neighborhood every night so that I can look like Michelle Obama!"

So I do like every other woman does on a Sunday afternoon and I download a recipe app to my phone. I download a workout app to my phone. And then I sit on the couch and think, "Holy shit, I am SO PRODUCTIVE on Sundays!"

Monday rolls around and I wake up thinking, "OK, Week. I will face you. I have the apps to prove it." And things usually start out OK, especially if we've had a nurse on Sunday night and I'm reasonably rested. I greet Ike-a-saurus' day nurse, take the wee-er one to school, come home and have a nice hot shower and think, "See? This week is going to be great!" While I'm in the shower I plan out the menu for the night's dinner. I think about what a reasonable number of sit-ups would be to start my exercise regimen. I am feeling energized, positive, reasonably happy. I even plan on getting some writing done.

Then, I get out of the shower. 38 emails. 3 phone messages. A missing delivery of medical supplies. A web site that won't let me register so that I can submit out-of-network doctor visit claims. Phone calls. More phone calls. Sitting on hold. A nurse cancels for later in the week, so appointments and school pick-up and a million other things have to get rearranged.

Suddenly, it's already time to pick up the wee-er one from school. I dash over there, retrieve her, get her in the car and she starts screaming. She's over tired, she won't eat her lunch. Back home, more phone calls, discussions with the nurse about when and when not to mess with a baby's foreskin. Discussions about the consistency of trach snot.

Why is his stoma red?

(wee-er one screaming in the distance)

Let's put nystatin on it.

(wee-er one wants orange juice at the computer. No way. Screaming restarts.)

Do we have an order for nystatin so that the nurse is allowed to administer it?

(Why isn't Kipper playing? More screaming.)

Can't find the order.

(How about Play-doh instead of Kipper? Screaming.)

Email trach nurse.

Administer nystatin anyway. The wee-er one falls asleep face down on the floor. The wee one is home from school. He needs money/supplies/shoes/papers signed/homework help.

The nurse leaves for the day. Immediately after she leaves, Ike-a-saurus falls down the stairs with a poopy diaper. Much clean-up ensues.

And now. Now it's 5 o'clock. Am I going to make the meat loaf and potato gratin and fresh snap beans I was planning on?

No. I am going to talk to the medical supply company on the phone, arrange for spelling homework to commence, try not to step on the wee-er one who is still sleeping on the floor and who will, in turn, not go to bed at 7:30 as planned, all while keeping Ike from destroying the DVD player with the fork in his hand.

I always have good intentions. Big plans. Calm thoughts. And it all gets clusterfucked to hell and back.

Right now, though, it's Sunday at 1 pm and I am planning to make carrot risotto for dinner tomorrow. I am planning on firming my abs, eliminating this extra ass, and building up my stamina for the March of Dimes walk. I eagerly anticipate a moment or two of sexytime with my husband.

And I can't decide… is it eternal optimism that keeps me like this, or flat out idiocy that I never learn from week to week? The Impending Sense of Doom always wins in the end, doesn't it?

Yet, I still buy the carrots.