So... here's the scoop

forgive me for this:
"Houston, we have a problem."
it is just so apt

The doctor in Houston was very polite and personable. I think her personality helped her from being as condescending as I'm going to make her sound. I think she did us a service by being very straightforward with us, even though everything she said was 100% the opposite of what we wanted to hear.

She told us we need to reset our expectations.

She said Ike's trach is not a months long thing. It is a years long thing, most likely.

She said she won't even touch him until he has a fundoplication (a surgery where they wrap the top of the stomach tightly around the esophagus to eliminate the ability for food to rise up the esophagus; an irreversible surgery that could possibly also eliminate his ability to burp or vomit, and most likely require a g-tube. If you google studies you find things like, "In recent years, enthusiasm for antireflux surgery seems only to have increased, despite its often poor outcome, and the availability of highly effective medical therapy." She would require the fundo because of Ike-a-saurus' reflux, even though in the two milk scans he just had - one over six hours - there was no evidence of reflux.)

And even if we had the fundo done tomorrow, she wouldn't even think of doing a reconstruction until this time next year. They only do 5 laryngotracheoplasties a year, with an 80% success rate. And the airway kids share a PICU with RSV kids (unlike in Cinci where the airway kids have their own ICU, away from kids sick with respiratory contagions).

She told us we would get the same care with her as we would in Austin and that we should just stay home and take care of things here. She apparently knows our ENT very well, and at some point seemed to be parroting things he might have told her to say. They are both very conservative doctors. And she told us, point-blank, that she requires the fundo so that her success rate doesn't get messed up.

Houston is not going to be an option for us.

Oh, well.

I'm very glad we went. For one thing, it was nice to see my parents and it was nice to know that we can go somewhere with Ike and get back home, all in one piece. I got to eat mini-ice cream cones and steal one of my mom's gardenias, and get out of this damn house - all good things. Ike-a-saurus got to play on the floor at Pop and Tutu's, see some new sights, and poop in a fancy doctor's examining room.

Now we are much more confident in our decision to go to Cincinnati. We will not always be wondering if there was something we could have done closer to home. We are armed with questions for the Cinci docs, and we are, unfortunately, weighed down now with limited expectations.

But at least we know that if, in Cinci, they say the same thing about the fundo and the timeframe, we have heard it before. And we know that our other option is to refuse the surgery, wait two or three years and just get used to the trach.

I am not happy about being told to reset my expectations. I don't want to hear that. Who does? But I am not willing to accept it - not without a lot more tests that will prove to me to beyond a doubt that Ike has this terrible reflux, it has caused his stenosis, it must be treated with surgery, etc. I am not taking someone's word on this. I want numbers and pictures and meetings and discussions before anything happens to my expectations.

What I expect is for someone to fix my baby. I expect it to happen as soon as it is safe to do so. I expect the best care the universe can offer. I expect a lot of fucking things. But I don't expect a doctor to make blanket statements about his care without doing a lot of tests to see where we stand. Every kid is different, and every surgery should be different. Even if he has classic signs of some particular problem, I want to be damn close to 100% sure those symptoms aren't all from other things. Everything that he has that points to reflux causing and/or exacerbating his subglottic stenosis, can be attributed to something else, too. Maybe I'm naive. Maybe not.

Before I agree to anyone cutting my child and altering his physiology, I want hard evidence that there are no other options. Having someone tell me they want to do something so that their success rate isn't potentially in danger of getting messed up - or that "this is just how we do it here," is not acceptable to me.

When she said my husband and I don't grasp the severity of what's going on with Ike, I wanted to laugh out loud.

I grasp!

I fucking grasp!

I watched him turn blue. I watched him in a medically induced coma. I watched him struggle to relearn how to eat with a plastic tube in his throat. I watch him do his damnedest to be a regularly developing little dude who can't help but love the world around him. I watch the trach try to take this from him, and I watch him fight against that. I watch him smile and laugh his crazy trach laugh everyday. I watch him conquer the world. How can I not try to conquer it with him?

I fucking grasp.

And that is why we're going to Cincinatti. I wish we were going tomorrow. I wish we were going yesterday.

Comments

[chris]

Oh, Kari.

I don't know what else to say. Thank God she was honest about her limitations. It sucks, but at least she told it to you straight.

Bring on Cincinnati!

[Laura M]

I'm so sorry. It is so very worth it to make the trip to OH. I feel sure also that if any family in the world can survive this endurance test it is you guys. I am thinking about Ike and you and all. (and PS I am just getting caught up on all of what went down, so please forgive all of my responses at once).

[Suzanne]

"I am not taking someone's word on this. I want numbers and pictures and meetings and discussions before anything happens to my expectations."

Good for you! Screw them and their lowered expectations out of fear of messing up success rates.

[Stephanie]

I know it's been said before, but Ike has the best of all possible moms. Here's hoping for lower hurdles.

[clare]

of course your grasp. for god's sake!!

i don't know if i have suggested this already but i think it would really help you to read the literature of SGS and LTP/R. Dr Cotton has published a mass of papers - if you can't find them online pls feel free to email me and i will share what i have.

[Tracey]

I'd like to effing grasp her. I guess you can cross Houston off your list...

[Liz H.]

yep, good to confirm there wasn't some terrific resource closer by that you hadn't investigated. And good that she was so frank to let you know she was being guided by her desire to keep her numbers up in the formula of factors behind her medical advice. Because that's heinously irresponsible, to recommend irreversibly altering your baby's anatomy to serve her career goals. Good to know up front where she's coming from. No place you need to go, nor let her take Ike with her.

[Heather D]

Oh Kari,my heart really goes out to you and your family! How insensitive of her to say you don't grasp the situation. How ridiculous. It seems like it was the right thing to do - to go there for a consultation - but no need to go back. You guys will get through these obstacles, whatever they are, with people who understand that you're right: that Ike should have the best care possible and that you guys are fighting a beautiful fight to get him well. My friend here in Maine reintroduced me to the phrase: opinions are like assholes; everybody has one. You guys got her opinion and that's all it was: an opinion. Sorry for the long-winded comment; I just wanted to show some support!

[Karin]

Just to lend my support... You are SO very, very, very right. Make those doctors earn the right to treat Ike. Charts, graphs, pics... the works!

It's amazing that a doctor would suggest a procedure that could alter Ike's life (after all this is over and he's big and healthy even), without ever having checked him over herself. Nice use of "First, do no harm", lady. Sure sounds like she was just parroting someone else.

Anyway, thankfully, Ike has you to advocate for him. And thankfully, you do a great job of it. When I see his sweet little face in the pictures you post, it sure makes me happy that he has such a great Mom. :-)

[Stacy C.]

I'm glad you were able to rule out this option, knowing there's something better out there, because I would hate to think of Ike going under the knife of someone who thinks you don't grasp how serious this is. Sheesh.

Now I'll be praying for the time to FLY BY till Cincy!

[Susan]

You're a great advocate for Ike--I wish Cinci were coming up sooner.

[Kara]

Come on Cinci!! I'll be sending "the give Ike an earlier appointment vibe" as frequently as possible. Grasp, my ass. WTF!

[The Crew of 6]

I totally understand, and have been there, done that (and still doing it). The good news is that you don't have to settle for anything you feel isn't in his ultimate best interest. You may have to fight, you may need to be persistent and it may take almost everything out of you, but you can be successful. I will pray it doesn't have to come to that, and there are doctors in OH that can do what it is necessary to make a meeting of the minds happen.