Uncontrolled Glaucoma

It’s never good news with my daughter and her vision.  Never.   Well, maybe once, but that must have been an accident.  She’s had high pressure for a good while now.   We know for sure she’s had it for six months because that’s when we started measuring her pressure at home with the leopard-print tonometer on loan to us from Duke.

We haven’t seen reduction in pressure in the left, only really functional, eye since that time.   Based on guidance from her doctors we’ve increased the pressure-reducing drops, added a second type of pressure-reducing drops, added altitude sickness medication and increased the dosage of altitude sickness medicine.  

All of those things didn’t affect the pressure in any way.   The only thing they’re likely doing is slowing the production of fluid in her eye to match the rate at which it evaporates.   Pressure unmanaged at the levels my daughter consistently has is permanent damage pressure.

Today she saw a pediatric glaucoma specialist who said she’s experiencing uncontrolled glaucoma and there are two routes we can go with it.   The first is to do nothing.   Her vision will remain consistent but will slowly diminish until it is completely gone.   There is a chance she will have discomfort and pain from the eye at some point in the future and if so, it might have to be removed.  

So that sounds bad.   Definitely bad.   The alternative is to do surgery on the left eye doing a “Pars Plana Vitrectomy with Ahmed Implantation”.   This means they remove the vitreous or “jelly” in the center of the eye and replace it with another fluid, possibly silicon oil (which she already has in her right eye).   Then they add a valve into the eye so that the fluid can drain normally.  

This seems like an easy choice to me but there are catches.   The surgery isn’t without risk.   The surgery will also, absolutely change the way she sees things today.   I likened this to when my daughter got her new glasses and it took a bit for things to not look strange through them.   But it’s more than that.

It could change things dramatically to her.   And that might be very unsettling and frustrating to my daughter.  The doctor today said to discuss with our daughter and see what she wanted to do.   We’ve asked her and for now she wants to have the surgery done.   I said, “and we’ll get to go to Detroit.  I know you like going to Detroit.”   She laughed and said, “and I like going under anesthesia.”

I’ve sent some emails off this afternoon to see if Dr. Trese would be the one to perform the surgery or if we should have it done here.   I’d prefer Dr. Trese.   He knows her eyes like no one else.  

The Tiny Girl Chronicles:  Yesterday I was talking to My daughter’s music therapist.  She brought her four-month-old daughter.   My daughter hasn’t touched a tiny baby since she lost her sight.   She was so interested with how tightly a baby can hold on to your finger and what her hair felt like.   Ella, the baby. smiled at my daughter while she touched her.   Even though my daughter couldn’t see it, she was excited to know she was making the baby happy.

The Big Boy Update:  This goes back to when we were in Hawaii.   My son said to us, “does anyone ever tell Nana it’s okay to look ugly?”   Nana had just told him he was going to look great for the luau.   I don’t think my son wanted to look great.