Tuesday, July 15, 2014

The Post I Didn't Want to Write

March 2014

Part of me has kept hoping that if I don't write this post, that it's not true.  Yet, time and doctors appointments march on and truth is truth whether I want to write it down or not.

Nathan is not doing well.

There.  I said it.  His last several test for macular degeneration have all be successively bad news.  It is as inexplicable and the good news from 9 months ago.

In January, Nathan had a 6 month follow up appointment along with Emma and Annika.  Emma's eye checked out great.  Dr. Cory thought Annika was in good shape as well.  But Nathan was dramatically worse. Dramatically.

I called our pediatrician, who is also a dear friend.  We increased Nate's meds by 50%.  And waited for two months.  March 4th was reckoning day.  I brought Nathan and Annika in for appointments.  Annika was decidedly doing better, but for Nate it was as if we'd done absolutely nothing.


July 2014

My goal when I began writing this post months ago was to go into detail on a somewhat scary, but necessary procedure that my retinal specialist thinks will help.  Despite the tone of opening of this post, I felt incredibly calm about the whole thing.  And was somewhat, un-rushed about pursuing the additional procedure which we cannot seem to get insurance approval for. (Something about Nathan not being able to have "age-related" macular degeneration at 11.  While that fact is technically true, it's the only diagnosis that matches his symptoms.)

Meanwhile, Nathan has now had two appointments with more inexplicable good news.  But it's not quite good enough.  And Nate still needs the expensive PDT and we've made no headway with the insurance.

So we've set a date in Sept.  If the insurance won't pay, Wendell and I will pay out-of-pocket (possibly with some family help) and the doctor will donate his time and laser so we can just Get The Thing Done.

The doctor is quite confident it will help.  Still, we both (the doctor and I) recognize that we are using Nate as a guinea pig because of his age (older than Annika), situation and having and eye to give.  (Unlike Emma, who only has one good eye.) Which isn't exactly the kind of thing that makes a mom comfortable.

One the flip side, if we don't do this procedure and he gets huge lesions in both eyes.  Well, that's not a good option either.

It's a weird place to sit, with no easy answers, but a decision that must be made.  And regardless of the outcome, there will be consequences to be paid.

Nate rockin' Wendell's Oakleys

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