First, the good news: six weeks ago we came to Detroit well ahead of schedule because my daughter’s vision was decreasing and we didn’t know why. Her pressure had dropped to six in one eye and I think zero in the other eye, which is respectively bad and abysmal. He artificially increased the pressure with Healon and set a recheck for today, six weeks later. We all hoped the pressure would maintain. Today she had a pressure of seventeen in her left eye, the highest number I’ve ever heard, and thirteen in her right eye. This is good news. Long term her eyes may never be able to maintain pressure on their own, but that can be managed with the Healon.
The stable news is her clouding lens (or cataract) in the left eye. Dr. Trese said he couldn’t get much view into the back of her eye as a result, but it doesn’t look much more clouded than last time he saw her. He can’t see in well, but she can see out far better than he can see through the short distance into the back of her eye.
She does however have some new vessel growth around the iris area. We’ve seen this before, way back, when this all started late last year. These aberrant vessels grow to try and get more oxygen to the eye. He said they’re very small and shouldn’t affect her vision much and they’re also small enough to hopefully not impede the eventual removal of her natural lens.
I asked him if once a cataract starts to form, does it ever stop progressing or will it always continue? He said it will likely continue to get worse, but for now he doesn’t think it should be addressed. Removing her lens will disrupt her main vision so waiting until the procedure is necessary is the most prudent course. He plans on discussing the latest situation with our pediatric ophthalmologist to plan for the future and to determine who is best to do the procedure. As an aside here, he was very impressed with what he saw her doing visually when he came into the room given the state her eyes are in.
The, “it might be bad news” part is the right eye. To sidestep for a minute, what can the right eye see at this point? The right eye was more damaged having only light and dark perception last year. Her retina is now attached and the rods and cones have had time to heal, but she doesn’t seem to be seeing much of anything with the eye. Recently she’s let us patch the left eye for upwards of twenty minutes to get some exclusive use of the right eye, but when we’ve done so she seems to see almost nothing and uses the skills she’s gained over the past year to navigate as she moves around
Today he said there were two things happening in the right eye, specifically in her field of vision. While the retina is lying in place and flat, there is one large fold right at the left front of her eye. It’s the area of retina we would use only for extreme peripheral vision but in this case, it’s folded in and is blocking the left side of her field of vision. He drew this diagram:
What’s the “Baby Swiss Cheese” part, you say? I’m glad you asked, because that’s what he talked about next. There has been cellular growth from the area in which they removed her natural lens. This happens in a percentage of patients and in the case of my daughter, that cell growth has created a matrix with small holes in it, making it “like trying to look through Swiss cheese”, Dr. Trese said. Then he clarified his statement saying, the baby Swiss kind with the small holes.
So even if she can see with the right eye, it’s not getting much chance to be able to see with what’s going on in the front areas. Dr. Trese wants to perform surgery on her right eye on December 12th to remove the cell growth and see if the retinal fold to the left is in any way attached to the cells, possibly freeing it up to flatten back out. There’s a also chance that fold is from her retina stretching while being detached in which case it will likely remain as is. One good bit of news though is the PFO heavy substance in her right eye, which was put int to help flatten the retina, is still there and might help flatten the remaining fold.
So, silver lining? Can the right eye see but hasn’t been given a chance to or is all this on an eye with a retina that just doesn’t work any more? We won’t know unless we try. So it’s back to Detroit in two weeks for eye surgery. Best Christmas present yet would be some returned vision in her right eye as a result.
And on a final note… as we were at the mall after the procedure, I got an unexpected text message from my daughter’s Pediatric Ophthalmologist asking how things went. She is one very kind and caring doctor. It always amazes me how doctors who take care of so many patients have time to remember you and check on how things are going.
The Big Boy Update: My son was unable to focus at school the last time my daughter and husband were in Detroit. This time he said he was going to work on something special for his sister and me while we’re gone.
The Tiny Girl Chronicles: My daughter said so many things that were funny today but I’m going to put the one here that was the most touching. We went to the mall to eat after her procedure. She had brought her panda purse full of pennies for the fountain. She not only likes to throw them in, she likes to makes wishes. I sat beside her for a while, listening to her make a wish and then throw a penny in. Not one wish had anything to do with her vision. She’s not mourning the loss of her vision, it’s just her reality. What is apparently wish-worthy is for Avi be her best friend at school, for Madison invite her over for dinner and for her brother be happy about the present she’s bringing home for him tomorrow.
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