... I don't like to gamble. The thing about Tate's eye condition is that it's pretty rare... there is no "normal". I mean, they kinda know what to expect with a typical PHPV case, but when things go a little haywire like they have with Tate, it's hard to predict a timeline on the rest of it.
When we arrived at the surgeon's office yesterday, it was the first time we had met him. He began by telling us that he doesn't perform an enucleation (eye removal) on children unless it's absolutely necessary. He went on to explain how removing the natural eye can affect facial structure as he grows (I keep picturing the guy from The Goonies, which I know isn't realistic, but I just can't get past it). He also described the two methods of replacing the eye... either a plastic sphere or a butt-fat graft (yes, I'm aware that's not the technical term, but it's how I remember it) that would be sewn in and attached to the muscles, over which would fit his prosthesis. With the sphere, we risk Tate rejecting it since it's a foreign object, and "spitting it out". But with the butt-fat graft, even though it should be better accepted, we face a possibility of graft failure. So at this point, Dr Y asks, "So what would you like to do?"... hmmm... I think I'd like to jump of a cliff now, thankyouverymuch.
We have hit brick walls every step of the PHPV path. Most PHPV kids have anterior or posterior... Tate has both. Most PHPV kids have at least some vision out of their PHPV eye. Tate has none, and no chance of regaining it. Most PHPV kids don't ever have a problem with pressure... Tate has neovascular glaucoma. Most PHPV kids don't experience eye degeneration... Tate's started with band keratopathy (the calcium deposit over the cornea that makes him feel like something is in his eye) and has a bone growing in the back of his eye from calcium deposits, which causes him pain. So forgive me if I'm not 100% confident that the enucleation and prosthesis will go on without a hitch. I have this "What else?" attitude right now, and I just can't seem to shake it.
So back to my gambling analogy.... as I said in a previous post, Tate hasn't been complaining of pain much at all in the last 2 weeks or so. As far as I'm concerned, that's a God thing.... an answer to hundreds of prayers. I don't believe Tate is completely pain-free right now though. I do believe that his baseline for pain tolerance is a lot higher than yours or mine. So since he's not having additional pain right now, he's happy. Considering it wasn't that long ago that he was in enough pain to say that it hurt a lot, I'm happy too. So with his pain being bearable at the moment, we had to decide if maybe we should wait on the surgery.... give him that extra time to let his facial structure develop, so any asymmetry that might result would be lessened. But if we wait, we risk having to do it in "crisis mode" in the middle of the school year, disrupting his life quite a bit more. Or we go ahead with the surgery now, to relieve the pain he has, and we risk my kid looking like the guy from The Goonies when he's 19, and hating me forever because we jumped the gun on the surgery. Ok, ok... I know that's a little extreme, but I'm feeling pretty extreme these days. The point is that we don't know how long we'd have before he'd lose the eye due to it shrinking up and having to be removed, or the pain being intolerable. We don't know, the doctors don't know, no one knows except God. I explained to the doctor that we knew that removing his bad eye was inevitable, and I'd just as soon have it over with before he starts school in August. The doctor agreed with me that that's a benefit to doing it when he's young... kids aren't quite as mean at that age. When I asked him at the end of our appointment what he recommended, he said "If I thought that my child was in any pain, enough to affect his quality of life, I'd take it out." I appreciated his answer and his honesty, but I was still torn about letting my kid look like Sloth.
So what do we do? Well, I take the advice from a friend and ask my four year old what he wants to do. Yes, I've resorted to leaving a life-changing decision to a guy who entertains himself with Mickey Mouse Clubhouse every morning. I asked him in a hundred different ways, and his answer remained the same... "I want the doctor to take my eye out because it's sick and it hurts me." Me: "But when I've been asking lately if it hurts, you keep saying no." Tate: "No.... I've been saying it always hurts a little bit." Me: "So it's hurting now?" Tate: "No, it's not hurting now." Yep, that's pretty much how it went. So I had Sarah talk to him today too... She had almost an identical conversation with him. But it did make me feel better to know that he's more than ok with this surgery, he's actually saying he wants to have it done. He tells me he doesn't want his eye to hurt anymore. That's all you had to say, Tate. His surgery is scheduled for January 21st.
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