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.

Waiting for the ENT consultation.

tricked out minivan
exhausted mama, daddy
little tiny Ike

This evening, my husband, Ike-a-saurus and I will be driving down to Houston for our appointment tomorrow with the Quasi-Fancy Doc. It's just a consultation, I'm thinking more of an interview-type thing, so that she can hear his background and we can ask her questions. Our awesome pediatrician has warned us that even if we love the doctor, we have to make for damn sure her support staff is worth a toot. It's the support staff that keeps everything OK.

So off we go.

The minivan is tricked out with a power inverter, nebulizer, o2 tanks, an oximeter, emergency trach kit, plus a million other things. In August, we'll have to get all of this stuff on an airplane. Can you imagine?

Hopefully, this trip to Houston is quick and painless. Hopefully we learn something new. I am a bit suspicious that it will just be waste of time. But a three hour drive is a lot closer than Cinci, so it doesn't hurt to know what our "local" options are.

In other news, we have approval for the $4,000 Tobi, and our co-pay is now 0, so we're giving it a whirl. I've been assured that the side effects I read about are mostly with IV tobramycin, and that inhaled Tobi is very well tolerated. I can't help but fear, though, that after a round of Cipro, this stuff in his system is just helping to create the superhero of all nasty bugs. Plus, it commonly makes kids' tracheas bleed. Awesome. So, on record, I am suspicious of the Tobi, too. Very apprehensive.

In other, other news, I think I have poisoned myself with rescue remedy. Is that even possible?

Ah well, it's always fun to start a roadtrip with a hangover…

Hanging out, enjoying some song, and some feet…

http://www.dropshots.com/dropshots.swf?p=0&u=http://media7.dropshots.com/photos/429477/20090524/062719.flv&l=http://www.dropshots.com/carole22#date/2009-05-24/06:27:19&d=1
Photo Sharing – Video Sharing – Photo Printing

digits move so fast
supersonic ninja hands
an impressive blur

I finally got that punching bag. And once I hauled the big box home, took all the pieces out, put on my swishy nike workout shorts (that have never seen a workout or a drop of sweat), I got to work.

"Do you need help?" my husband asked.

"No!" I shouted, dropping things and tripping over water guns.

20 minutes later, abandoned by kids who couldn't stand the heat on the back porch, nike shorts covered in grease, I hear: "Are you sure you don't need help?"

"No!" I shouted again.

After another 20 minutes, I acquiesced and allowed him to help me cram the foam into the heavy bag. But all the screwing and nut twisting? All on my own. As always. (yes, yes, I'll be here all weekend.)

So now? Now I have a fully functional Everlast heavy bag. I beat the crap out of it as soon as I built it, even though I was already sweaty and tired. I bought the wee one some gloves, too, much to the consternation of apparently everyone in the world. He and the wee-er one are sharing them, one glove each, Billie Jean style.

I am very disappointed to not have the heavy bag in the living room, but I understand that it is big and we can't have anything block the TV. Kidding. I understand it doesn't match the current "late 20th century dorm room" interior design we have going on. This means it is relegated to the back porch, so I cannot punch it while I am watching Ike-a-saurus at 3:30am. Bummer. Maybe I can move the sleeping baby, his o2 concentrator, his oximeter, the suction pump, and the nebulizer outside with me. Think he will stay asleep?

Ah well, I will just punch it with my mind.

fast forward button
would be nice trick for real
so would some patience

Well, after the blog tirade and a few days of stomping around the house, and then a few more days of being sad, I am trying to shake the funk from my brain and get something done around here.

We were so upset to hear that Cinci couldn't see Ike for the preliminary tests until September, my husband and I sat down and found a handful of doctors all over the country who we thought might be able to help Ike. There is one in DC, one in Pennsylvania, I think one in Boston, a possible one in Dallas, and one in Houston.

Houston is the closest to us, and we had heard a good recommendation for this doctor, so we called the hospital and spoke with her nurse. I wrote a desperate impassioned email, explaining Ike's entire medical history and about an hour after I sent the email, my husband received a call back from the nurse. She had spoken to the doctor, who responded, "How can I help?"

!!!

Very exciting!

Until we found out she can't see Ike until July. July isn't that far away, but you have to understand that when you're never sleeping, and you're constantly suctioning a trach and worrying and worrying, each day is like two days. At least.

We talked to the nurse again. She recommended we come to see a colleague of the Fancy Doctor – someone who is supposedly equally as experienced, just not the head of the pediatric otolaryngology department. We have an appointment to see her next Friday.

While all of this was going on, we got a call from Cincinnati. They have Ike scheduled for a battery of tests from August 3rd-6th. A lot sooner than we thought! But still not soon enough for my impatient self.

I have to keep reminding myself that it's already almost June. And to get to Cinci, it's going to take a lot of time to coordinate travel. So, really, August 3rd is not that far away. Right? I have to keep saying that.

We are keeping our appointment with the Houston doctor, because it feels like speaking to a handful of highly trained specialists will help educate us. We'll hear differing opinions, hear differing options, and I think that will be good. It will hopefully give us more confidence in what Dr. Cotton says in Cinci, if that makes any sense at all. And then after those tests, depending on what we find out, we can decide if Ike-a-saurus can be safely treated in Houston, or if our best bet is to stick with Cotton. I think we probably already know our answer, but having more information under our belts is very appealing.

All of this news has helped lessen the blow of having to repeat the nuclear milk scan today – Ike-a-saurus was not pleased to be the middle of a baby sandwich again. Twice in one day. He was, in fact, inconsolable.

It makes me fear for the three days in Cinci. So many tests all at once. Ugh. But then, maybe they will tell us something. It is terrifying to think they will tell us something bad, but just knowing SOMETHING will be helpful, right? Right.

The quest to become a face breather is not easy. But at least we're finally starting the quest. Time to stock up on the Xanax. It's going to be a long summer.