In forty eight hours, VeeGee will likely be in the recovery room waking up from surgery. I had to take her to the doctor this morning because she's been hoarse the past two days and I was worried that there could be the beginnings of an infection that would knock her out of being able to have this surgery. And we've waited so long for this, agonizing about whether or not it is the right decision for her, agonizing about how the recovery is going to be different this time, since she's so much older and more mobile than she's been in previous surgeries. I'm dreading the time in the hospital primarily because I'm worried about how we'll keep her still enough to get better. She's so wonderfully active now.
The surgery, which is going to be a combination of two different surgeries, a pharyngeal flap and a velopharyngeal sphincteroplasty, is supposed to help her be able to have more productive speech by regulating the flow of air. I've read many accounts of how wonderful this surgery is and what incredible gains children have made after having it. And then I've heard the opposite. It's really hard to know how to choose these things. I mean, darnit, I'm not a doctor, Captain, I'm a writer!
Basically, our approach has been to hit at the problem from every angle available to us: oral motor, regular speech, occupational (feeding) therapy (which we also think has helped her speech), nutritional therapy (fish oil!!!!!), and surgery. I'm sure that at some point we'll have to start picking and choosing, or that we could get to a point of diminishing returns. But we're not there yet, and she's really thriving and her speech improvements pretty much stun everyone every time they see her (not just therapists), even from week to week.
I think that we special needs moms, like other moms, but more so, are kind of like general contractors. We have to kind of know what's going on in a global sense and then find people to execute different parts of the "project" as appropriate to each one's particular expertise. That's one of the problems (and advantages) with medical specialization (which is relatively new). Each doctor has his/her own little special interest, their own little (frequently very narrow) territory, largely to the exclusion of other possibilities. This puts us in a position of having to make decisions that sometimes pit specialists against each other. I just have to hope that it becomes an iron sharpening iron situation and that the one who can make the best, most accessible argument, is the right one.
Who knows what our path would have looked like if VeeGee had been living with us since birth. It's so hard to know those things, and it's almost too painful to think about them. There's a big part of me that looks at other children with the same disability profiles and feels sad. Could I have helped VeeGee be able to breast feed? Did she HAVE to have the trach and feeding tube? I really don't know. My gut actually tells me that both the cleft and the severity of the retracted jaw did, in fact, make those things necessary (though I think I would have certainly worked harder than her birthmom did to facilitate bfing because of the oral motor benefits that I'm sure, at the minimum, it provides).
I guess I say that to say that there are SO MANY ways to go about a treatment plan. And that, even if we make "wrong" decisions, like the ones that we had to pick up after, a kid can still thrive in the end. In most ways, you'd never know that VeeGee was/is as far behind as she was/is (until you lift her shirt and see that danged button). I know it's easy, and hard not to, agonize over every single decision. But I'm having to kind of give myself a break and let instincts do some of the work. Do I trust her surgeon? Yes. I trust him mostly because he's willing to sit down with me and treat me like an intelligent person. I don't know. Is that a good enough reason to go forward with this surgery? I hope it is. I trust it is. That's the best I can do.
1 month ago