The Good, the Bad and the Ugly

We're finally back at the hotel after a long day.

Ike was quite a champ
for the CT this morning, and he delighted everyone in radiology by wearing his "Spaced Out" shirt (I was very pleased everyone got the joke). He was super spacey, too. A side effect of being anesthetized through a
trach is that kiddos go all wonky, movement-wise while the gas kicks
in, so it took three of us to hold him as he fell asleep. That was not
so much fun, but he did great, and the scan was over quickly. He slept
through our clinic appointments with pulmonary and GI and now he's kind
of wobbling around and enjoying some thickened Pedialyte. Mmm.

Here's what we learned today:


Ike is a trooper. We've already known this, but I had to put it in so there would be some good.


His CT actually looked worse than last year. [Huge freaking sigh here.]
There are patches of schmutz (that's the technical term) that weren't
there last year, and there is evidence of a bit more bronchiectasis
than last year. The pulmonologist wasn't thrilled, but he wasn't
flipping out, either. Possibly the schmutz is something that comes and goes,
I'm not really clear on that, but it makes the pulmonologist wary right
now about the surgery. He says Ike has to have good reserves to have a
successful recovery from airway surgery. Ike would be intubated and
sedated and on his back for several days after the surgery, and if he
goes into something like that ALREADY having schmutz, it increases
chances for things like atelectasis and pneumonia and other things that
would make recovery difficult and possibly even cause the trach to have
to be put back in.

Basically, there are something like seven criteria the doctor
wants before he gives his OK to go ahead with the surgery, and out of
those seven things, Ike got a yes on maybe three. The good news is that
many of the other seven can be answered after the bronch tomorrow. The
bad news is that even if those answers get yeses, other things could
pop up to negate them.


We really are walking a tightrope right now. A super skinny tightrope between tall, tall buildings. Even though much of what the
pulmo told us was not completely unexpected today we had hoped, hoped, hoped to hear

things during the bronch tomorrow morning look perfect (which is something we don't
expect), we will still be on the tightrope just because of what we saw
today. Of course we want Ike to be able to recover from the surgery
with minimal complications, but we have to weigh that against more time
with the trach, more infections, more damage to his lungs, etc. We
can't put him through any unnecessary risk, but he's the kind of kid
who will have risk no matter what.

So now we just have to wait until tomorrow. If there is any active
inflammatory lung stuff going on, it's a definite no. If the schmutz is
worse or infectious, it's a definite no. If there is tracheomalacia (which he has had in the past)
combined with schmutz, it's a definite
no.  Weird ENT stuff could pop up. Weird GI stuff could pop up.
Basically, it's a crap shoot of the crappiest kind, because at this
point, our odds are kind of low.

Our odds have never been perfect, though, and our pulmo at home
told us that. Yet… we have to hold out hope. We just have to. Even
after everything today, the pulmo wasn't negative or scary, just
realistic. He wants what's best for Ike and so do we. He may be more
conservative than we'd like, though, which puts us on the tightrope more than we want to be.

Tomorrow morning at 7:15 am eastern time we check in for the bronch, and at 9:15 am it should be underway. Then we'll know if we're packing our bags for home, or coming back to the hotel to do some laundry because we're staying. I know you know I hate laundry, but I might be willing to make an exception just this one time…

Not much sleep tonight, I guess.

18 thoughts on “The Good, the Bad and the Ugly

  1. Oh jeepers, I am sorry.
    What many people don’t understand is the weariness of parents of extraordinary kids like ours. Any one can “buck up” if the fight is only one-round. But go 15 rounds and the bounce-back gets a little tougher.
    We are praying for your guys and the Ikester.
    Hang in there. I recommend a Rocky movie on pay-per view for inspiration ;-).


  2. schmutz sux . . .
    ALL my best to y’all tomorrow morning
    (and always, of course). Hugs for fortification, all around.


  3. We were in a similar position last week… It’s a weird place to be in, that place between hoping and breathing! Good luck tomorrow, I hope it turns out to be a soapy, sudsy day for you.


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