For a long time, my daughter had three separate substances in her right eye. One was to maintain normal pressure, one was to replace the vitreous Dr. Trese removed when he performed his initial surgery on December 19th, 2015 (a day that sticks in my mind to this day,) and a third, heavy substance that would act like a small ball of liquid metal in her eye, weighing down the retina in the hopes of flattening it back down. To have this happen, my daughter had to lie on her back for most of the day as well as night.
My daughter followed all the instructions given to her, including tolerating drops in her eyes upwards of twelve times per day. Dealing with drops wasn't fun for her. We've had so many drops over the years we started calling them by the colors of the caps. She became so good at the drops after a while she'd just lean back, hold her eye open and wait for them to fall. This never failed to impress the hospital staff, but to my daughter, the faster she got drops in, the more quickly she could get back to what she was doing.
The initial surgery and routine did lay her retina down to some degree, but additional vision didn't return to her eye. It's hard to tell what's wrong sometimes. Dr. Trese by now had thought the initial insult to my daughter's eyes with the infection, retinal detachment, and prolonged oxygenation issues had damaged the rods and cones to such an extent that they were non-functional. He had many patients who'd regained some vision over time and that was always possible, but for now, her right eye wasn't seeing.
We focused our attention on her left eye, returning often for EUAs in which Dr. Trese frequently would add Healon to get her pressure back to normal. We wondered if she'd have to have Healon added every few months for the rest of her life to maintain pressure because while her eyes weren't producing fluid, they were draining fluid away.
One thing that happened that Dr. Trese addressed surgically multiple times until it was clear it wasn't worth trying anymore was the removal of scar tissue in the interior of my daughter's right eye. She couldn't see out of it, but she also had significant scaring inside the eye that over time was like large swiss cheese that turned to small swiss cheese in that it blocked all but a few openings of light. Over time those little swiss cheese holes closed up entirely. Dr. Trese said children have a high scaring response so he had to be careful what he did. In removing the scaring, he was likely to cause more scaring to happen.
Today, my daughter's right eye isn't something we see often. She wears glasses all the time, but when you do get a glimpse of her eye, it looks strangely abnormal. It's as if the white part of her eye is swallowing up the iris. Whatever tragedy happened inside her eye at the start and the subsequent things we tried to do to save her vision weren't enough to beat the malformations in conjunction with the damage done. She still has two of the three substances in her eyes, they don't bother anything and can continue to live there indefinitely.
While we tried to save what was left of my daughter's left eye and remaining vision, she had additional things happen. First, and most alarmingly, she suddenly went completely blind. Today, she knows how to navigate a world blind, back then, she didn't. It was a frightening time because everything in our house seemed to be at eye-height. Counters, drawers, tables, chairs. We scheduled a quick trip to Detroit to find out she had a hematoma inside her eye from what was likely a hit to the head or eye.
To this day, we don't know what caused it, but it could have been anything. The force it would take to cause such damage to a normal eye would be significant. With my daughter, it could be something fairly minor. In order to resolve the hematoma we had to do...you guessed it...more drops. It resolved, but sadly afterward she lost much of her color perception because she had gotten some blood behind the retina which caused her to be unable to perceive colors as well after that.
After the hematoma had resolved, we tapered her steroid drops and because nothing ever goes to plan with my daughter's eyes, she developed edema in the eye. That made it even harder for her to see even though she'd gotten her minimal vision back for a short while. The treatment for edema was steroid drops—which we'd just gotten off of. The only alternative was a non-insurance covered drop at $500 per bottle. The edema passed and we thought we'd wait to see if things got better. Because surely they would get better now. It had to be time for something to get better.
I remember one Easter when my daughter couldn't find any eggs at all, even the big ones when we were telling her exactly where they were right in front of her. Things had been getting worse again and we didn't know why. On our next visit to Detroit we found out her natural lens had developed more of a cataract and that was causing the new vision problems. We knew there had been a little clouding before, but it had gotten worse quickly. The only choice now was to remove her lens.
If you remember from earlier in this story, my daughter wasn't a candidate for lens replacement like typical cataract patients. That meant she would be aphakic or "without a lens." If you ever took the lens off a camera and looked straight through it, her vision would be like that. Completely and totally fuzzy. She would have no way to focus because the entire focusing mechanism of her lens would be removed.
What we needed to do was get glasses for her that would accommodate her prescription with no lens. Those glasses would be responsible for doing all the focusing for her. And if you're thinking, 'but glasses don't adjust focus like the eye can" then you'd be correct. She would be stuck with whatever we gave her lens-wise. Probably a medium focal length. We could get her bifocals, but with her vision, that didn't make much sense.
You wouldn't think it would be hard to get glasses for a little girl who's going blind. A child who needs glasses to both protect her remaining vision, but also to let her see what little of the world was left that she could see. It was though. First, and you may know this already, but you can't get prescription glasses without a prescription from a doctor. Our doctors (we still were seeing multiple) couldn't give her a prescription because they didn't know what her prescription was.
Getting a prescription in-office is easy if you can see the letter chart, which my daughter could not. There is another way to get a prescription though, and that's by doing a refractive index test while she's under anesthesia. That test is fairly simple with the right equipment because it shines a light into the eye and then focuses it until the beam comes back at the right focal depth. Not having a natural lens was okay, they could still do that test, only my daughter was only going for surgery and EUA's with Dr. Trese, and he wasn't an opthalmologist, he was a retinal specialist. And there was another problem. Even if he'd had that equipment, my daughter's retina wasn't flat. It still had two buckles in it so the machine probably wouldn't work.
I got on the phone one day with my daughter's main doctor at Duke and asked if she could just guess a prescription. I said anything would be better than nothing. If she could guess the minimum, medium, and maximum prescriptions my daughter might need and send me those prescriptions, I'd fill all three, getting her three pairs of glasses. We could see which she liked the best. You hear things like, "the wrong prescription can hurt your eyes." And that's true, but we had nothing and my daughter had no lens inside her eye. I got a little desperate for a while until that call.
I filled +12, +17, and +22 prescriptions for my daughter, and yes, those numbers are correct. Without a natural lens you need serious correction. My daughter preferred the +17 ones. I was relieved as now I had her protected. Later on, Dr. Trese was able to borrow a refractive machine just for us and he got her prescription as close as could be guessed at and it turned out to be +17.5, so the glasses my daughter picked made sense. We even had bifocals added to them so she could have some close-up vision, should she even be able to see enough to do so at +21.5 down at the bottom of her lenses.
All seemed to be going steady for a while. We didn't have any more degradation in her vision and hopefully, this would be the last of the worst because what else could possibly go wrong with my daughter's eyes. In the next chapter, you guessed it, more goes wrong. But we're nearing the end of the story of my daughter's eyes up to know, and we do get to stable eventually.
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