High Pressure

My daughter had an EUA (Evaluation Under Anesthesia) today which involved multiple doctors looking at her eyes based on their personal specialties.   The main reasons were to get an accurate pressure reading because she has a very averse reaction to the pressure hand-held device and to get a mapping of her retina and the layers behind it.  

Both of these things could be done in-office, but she can’t see the blue dot consistently for the OCT and refuses to cooperate with the pressure reading device.   All in all, it was a good thing we had the EUA scheduled, because my daughter has had some loss of vision recently.   Her teachers have noticed it to the point that I got a phone call to let us know of their observations.  

The change with her is subtle, and since she can see so little to start, any more lost is sometimes hard to define, especially since she’s getting better and better at other compensation skills.   Also, she lies. She will tell you she sees something that isn’t remotely possible.   But she’ll say so with such an air of confidence that it’s deceptive.   In addition, she won’t tell us if her vision has changed.   At all.   She flat out refuses to talk about it and if pressed, says things are the same or that they’re better.

The EUA today showed her right eye completely covered over in internal scar tissue again.   It keeps growing back and it’s maddening to me because how are we to know if the eye can see when there is no way to see out?   Realistically though, the right eye isn’t functioning much at all, but I wish she had the opportunity to see out if the rods and cones did regenerate.

The left eye’s retina is attached and looks good.   The one surprise was her pressure—it was high.   This is so unexpected that I had to ask my husband to tell me what he said again because I didn’t believe it.   Here is a child with eyes that couldn’t produce fluid, so they kept dropping in pressure to the point they had to be artificially returned to pressure with Healon fluid.

Then late last year it looked like her pressure was maintaining, meaning her ciliary bodies had healed and were producing fluid again.   This was a good thing.    But now, instead of being normal pressure at fifteen or so, her pressure was forty.   But why?   Dr. Grace is going to send the images to Dr. Trese in Detroit and discuss next steps.

For now we have a third drop to add to each day to help reduce pressure.   It’s always the unexpected when it comes to my daughter’s eyes.

The Big Boy Update:  After parkour camp today my son wanted the window rolled down in the car.   He fell asleep almost immediately.   He hasn’t done that in a long time.   Blake, our sitter who was picking him up, brought him in slung over his shoulder.   He put him on the bed and he my son didn’t even move.   He must have had a tiring day at camp.

The Tiny Girl Chronicles:   After coming out of anesthesia my daughter is usually inconsolable for a bit.   There’s nothing you can do to help her.   If she falls back asleep it helps a lot, but sometimes she doesn’t.   Today she was very lucid and clear in her speech.   And she was mad.   And nothing was what she wanted.   And she didn’t LIKE THAT!  My husband said if he hadn’t been laughing a bit at how angry she was the nurses might have been concerned.   It was cute from an angry standpoint.   And it passed shortly.    Oh, and this was funny too: when it was time to take my daughter back to surgery the nurse came to get her.   My daughter was watching a show on her iPad.   She held up a hand and said, “not yet.  I’ll tell you when.”