One more week
Part of what I’ve been obsessing over (okay, the key thing) is Oscar’s MRI. It’s scheduled for a week from yesterday and as the date has come closer, it seems like all I can think of is what the brain scan will show. We got the call from Stanford today giving me all the pre-op info we need, which makes it all that much more real. I know it’s just an MRI, but he has to be put under general anesthesia for it, so I’m anxious about that. Far worse, I think, is this not knowing whether there really is a mass in his brain or on his optic nerve. At least the not knowing will be over in a week, since even if the neurologist can’t squeeze us in to explain the results, the hospital will give me a CD of the procedure. I should be able to identify a brain tumor, right? What worries me is that my “gut”/mother’s intuition is all over the place. On some level I don’t think there’s a chance that this kid has a brain tumor, but when I start thinking that, I remember the look one of the doctors gave me back in November when he said we needed to schedule this MRI ASAP (which apparently meant as soon as possible after the neurologist’s office remembers how urgent this is, which could very well be months and months). Thankfully, ASAP is almost here.
Dumbfounded
What kind of doctor puts the fear of god into a mother, telling her there’s a real risk that her child has a brain tumor and that he needs to have an MRI as soon as possible and then FORGETS to schedule the MRI? I have spent the past three months with the fear that my son has a brain tumor floating around in my mind, waiting for the hospital to call with a cancellation in the MRI lab. They called today to schedule us for APRIL and then told me that our neuro-ophthalmologist rushed the order in today asking for it to occur within the next two weeks. Not pleased right now.
The eye thing – part II
I think I just had an “aha moment.” I thought they were supposed to be light-shedding moments of clarity. This brought a little clarity, but not in a good way.
We spent six more hours at Oscar’s eye doctor on Wednesday. Six tortured, tear-filled hours where Oscar attempted to make sure we felt each and every moment in the same agony he did. It’s amazing to me that he knows that the waiting room is safe, but the moment we cross the threshold on our way to the examination rooms, he loses it. I think sixteen months of age is too young to understand what a doctor in a white coat means to a kid.
I thought we were going to the doctor to meet another specialist. We met far more than one. One after one they streamed in to see Oscar’s eye – pretty much only the right one, although they looked at the left to make sure it doesn’t do the same thing the right one does. The fact that only one of his eyes does this shaking thing is apparently fascinating to them. Makes it all the more difficult to diagnose and all the more interesting to discuss.
Still no conclusive diagnosis; just a determination that it really is time to do an MRI. The doctor we’ve been seeing since this summer has been prepping me for this. MRIs aren’t a big deal for adults; it’s just that kids have to be put under general anesthesia. I like that this doctor didn’t pressure us to do this immediately, but that he gave me some time to get used to the idea. It’s just that they really do need to determine whether there’s a tumor that’s causing the problems or if there’s another reason for his condition.
So, the reason for the aha moment? I just googled Oscar’s eye doctor (I did this before I first met him and I must have repressed what I saw) and something interesting came up. No, nothing salacious. Oscar’s eye doctor isn’t just an eye doctor. Actually, that’s not even his primary job – he’s not even identified as an ophthalmologist. He’s a neurologist with a certification in pediatric neuro-ophthalmology. What does this mean? I don’t know, really. I know it means that we really are not looking at something as “simple” as lazy eye or your basic nystagmus. I also realized that the “specialists” we saw weren’t quite as special as I had thought they might be (lovely as they were). They were the ophthalmologists. I looked them up – they’re top of the line pediatric ophthalmologists specializing in all of the childhood eye disorders. They were there to confirm that the irregularity isn’t strabismus, glaucoma, etc. before we move on to examining the possibility of a brain disorder.
I’ve had it backwards from the beginning. It’s not an eye thing. It’s a brain thing. I don’t think that’s a good thing.
The injustice
Oscar had a mini-exam today at the doctor. We were in to see a specialist, but his pediatrician thought she’d like to just check him out to make sure all was ok. He’s gained another 1.5 pounds in the past month, which I think is amazing (though not surprising – you cannot imagine the amount of food Nanny Norma and I shovel into this kid on a daily basis). The doctor’s reaction? Eh, fine, but let’s supplement his diet with Pediasure mixed with ice cream, peanut butter and chocolate syrup. Seriously? Um, yeah. In an attempt to finally get some body fat on this kid, his doctor has decided to prescribe high-calorie milkshakes. This at a time when my doctor has me on a diet of rice, chicken broth and the periodic piece of toast. Life is so unfair sometimes.
-
Etta’s Hats
Where I’ve Been
