Thursday, April 20, 2017

Lack of Data

I’d like to say I have good news today with regards to my daughter’s vision, but I don’t.   That’s not to say I have bad news either—it’s more of a lack of information.    To sum up before I get started, we don’t know if or what she can see yet.

This morning we went very early for her post-op follow-up.   We knew she hadn’t been opening the left eye yesterday because it had been stinging and since she had a metal shield over it (with small holes so she could see out) we didn’t think she was really trying to see.   She had spent the day lying on the chair and our bed resting.  

At the appointment this morning after taking the shield off we and ultimately four other staff members tried to get a look into both eyes, mostly without success.   There was a lot of screaming and holding her down because trying to cajole and compliment and bribe her hadn’t worked and her doctor needed to get a look in to see if everything looked good.

My daughter is a master at rolling her eyes upwards beyond the point you can even see the edge of her irises.  Dr. Prakalapakorn got a few glimpses, saw the “orange reflex” and a few other things that made it look like there weren’t any problems and then sent us home to come back in a week.

Some distressing things my daughter said (or whined about or screamed about) was that she saw “nothing”.   But nothing made no sense as there was nothing done to the retina or any area of her eye that would result in loss of vision.   The orange reflex showed an attached retina so there were no worries there.    What we did find out was when a bright light is shined on her eyelid, she responds by screaming and covering her eye with her hand.   So she can see light—she’s just highly sensitive.

Remember she has no pupillary function because her pupils are scarred and can’t dilate down, meaning any and all light comes in.   Her left eye after surgery can have lots and lots more light let in and the combination of the two was just too much for her.

So we’re waiting.   We had hoped today she would try and see something but mostly she lay in a fetal position with a black blanket over here, complaining miserably when it was drops time all six times today because post-surgery every drop stings badly.    We gave her her sunglasses later in the day and that helped some in that she wouldn’t always cover the eye with her hand, but it’s just tough going for now.

Some things that could contribute to her vision in the short term is an air bubble added from the surgery that obstructs vision but should dissipate out in the next two days and an injectable steroid added to her eye that behaves like large “floaters” that will take a month to be absorbed.    But neither of those should affect her overall vision.

Tomorrow we’ll see if she will try and look out of the eye some.   If she would try and look at the iPad under the black blanket on dim brightness we could tell which prescription glasses is a closer fit and, hopefully, that she can see.  I hope I’ll have positive news to report when I get back to the computer to write tomorrow’s post, because I sure would like to have some good ocular news to report about my daughter’s vision improving.

The Big Boy Update:  My son asked me if I remembered that big race I ran in.   I told him I wasn’t sure which race he was talking about.   He asked me if I knew who won.   I told him I didn’t know who won.   He said, “you know, the race with Hillary Clinton and Donald Trump”.  

The Tiny Girl Chronicles:  My daughter asked, “daddy, why are the chocolate chips in ice cream flat while the chocolate chips in the other things round?

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