Bilateral Detatchment

The Tiny Girl Eye Chronicles:   It’s late tonight and I don’t think I have the energy to go into the entire story, but I’ll give it a go.

About a week-and-a-half ago my husband thought my daughter’s pupils were no longer round.   He wasn’t sure and we didn’t worry about it until the next day when he had me look at it and then I said, “good grief, that’s definitely not round.   What do we do?!”   I called for an appointment but they didn’t know if they could get us in.  I sent a message to our eye specialist via the medical portal and she got back to me saying she could work us in on Friday.

By Friday her eyes and her vision had changed significantly.   Her pupils were constantly dilated, her blue eyes were no longer blue but a strange dirt dark grey color and her vision was very, very bad.    She couldn’t see the television any more and had no idea how many fingers you were holding up from seven feet away.   We were scared.

Dr. Grace saw her on Friday and agreed something needed to be done and the first step was to do an evaluation under anesthesia so they could get a better look.   Her inter-ocular pressure was low so it wasn’t glaucoma.  She saw no inflammation or signs of an infection.    She wasn’t displaying signs of a concussion from a fall and excluded other things based on her experience.

We didn’t have an answer or a course of action and it was frustrating, but we waited.    More emails were exchanged online as her situation worsened visually.   Dr. Grace coordinated an OR with two other specialists for this morning.    We were very grateful and hoped for some answers today.

The procedure was going to be about a half-hour, she said, but at over an hour in and we guessed the answer wasn’t likely to be simple.   When Dr. Grace did come out she told us they had done some extra tests, and thankfully they had the retina specialist available because he had helped in determining some of what was going on.

My daughter has bilateral retinal detachment.   There is also low blood flow to both her eyes.   That explains some of what’s happening, but it doesn’t give any indication as to why it’s happening.    Or, how to stop and fix the situation.

Okay, this is not good, I know you’re thinking the same thing I was thinking when I heard the news.   But it doesn’t mean it’s permanent, especially if we get the situation addressed quickly.    Dr. Grace said she wanted to admit my daughter to the hospital instead of sending her home because there were other tests and consults she wanted to have done and the best and quickest way to get them done was to have my daughter admitted.

As I write this I’m tired, but I’m hopeful we’ll know more tomorrow.   We’re having a brain and neck MRI, a consultation from rheumatology, dermatology and cardiology.   They’re performing an angiogram on her and possibly some other tests I don’t know about or have forgotten.

Here’s the thing, is it connective tissues?  Is it auto-immune?  Does she have a genetic issue like albinism?  Is it Marfan’s?  The number of things we’ve considered has been large, and most of them don’t fit at all other than the one thing that was used to consider the condition in the first place.  

It is a very exciting and challenging mystery.   It’s just not fun to have it happen to your own child.

Tomorrow we’ll hopefully know more.   My daughter has been great all day, getting only really angry once, and that was when they brought her the grape popsicle instead of the orange one.

The Big Boy Update:  My husband was with my son for most of the day.   He had one thing to tell me about him when we talked on the phone after bedtime: “he doesn’t get in trouble as much when he doesn’t have someone else he’s trying to boss around.”