It's easy to say that in hindsight though. What if we'd known she had an eye infection? What if we'd gotten to Dr. Trese earlier? What if we elected to NOT do some of the vision-saving surgeries because that would have been the better path for her eyes in the long run? So many ifs. In this case, this last piece in the story of the slow decline of my daughter's vision into darkness, we're back to pressure.
Many times we'd had to have Healon put into my daughter's eyes to maintain their pressure. Sometimes, we'd call and schedule an early appointment because her vision would decline and we knew it was because her pressure had dropped and the inner structures of her eye weren't well-supported.
At a certain point either because the drainage process in my daughter's eyes was slowed by the sheer amount of debris in them from everything that had happened both naturally and surgically. This was good. Her pressure was back to and was maintaining normal levels. It was a frustration, and one I will admit still makes me angry to this day. If the ciliary bodies were damaged in that initial infection such that they couldn't produce fluid, which caused her pressure to drop to zero, which caused her retinas to collapse inwards, then why, I ask you why, would the only thing to successfully heal be those very same ciliary bodies?
Dr. Trese said at the outset he thought the damage was so great they would never recover. Not only did they recover, but we also ran into the opposite problem I alluded to earlier. My daughter's eye pressure shot up. It was far too high. I mentioned high pressure could be controlled with drops to reduce the amount of fluid produced by the eye.
First, she was on one drop per day. Then it went to two drops. Then she had a second eye drop added. Then, and this is an interesting one, she was put on altitude sickness medication which has a side effect of reducing pressure. The dosage of that was increased three times. This went on for a long time until we were connected with a glaucoma specialist at Duke.
Dr. Freedman said everything we were doing wasn't going to matter because my daughter had run away pressure and it was permanently damaging her optic nerve the longer it went on. Dr. Freedman said the problem was the only fluids that were escaping my daughter's left and still marginally functional eye was what evaporated off the surface. This was likely because her eye had so much debris in it from damage, infection, surgeries, etc.
There was a way to help, but it would be significant. And Dr. Freedman wanted my daughter to be part of the decision. It wouldn't' be comfortable for a while, and she didn't have to do it if she didn't want to. If she didn't have the surgery to put a drainage device on the outside of her eye, behind the lid, she would slowly go completely blind. Some children took that option.
My daughter, when I told her about the choice as she was sitting on the branch of the tree in our front yard asked, "so if I don't have the surgery then I won't be able to see the leaves anymore?" I told her eventually, no. She did want the surgery.
I was quite scared about this surgery from a recovery standpoint. The cataract removal was awful on her. She wouldn't open her eye for five days. That surgery, I found out later, had a stitch right in front of the eye that hurt a lot until it dissolved. The drainage shunt surgery turned out to be a breeze. My daughter was and has never been bothered by it.
Unfortunately, Dr. Freedman told us there was significant damage to her optic nerve from the sustained high pressure. Because the optic nerve is a part of the spinal cord, it's not something that regenerates or recovers. We did stop more damage from happening, and that, at least, is a good thing.
That brings us up to now for the most part. We still have two drops in one eye per day and we check her ocular pressure regularly at home to make sure the shunt is working correctly. My daughter sees very little, sometimes it seems like she sees nothing. But that's not completely true. She runs into things all the time. And when I say all the time, I mean ten, twenty times per day? Maybe more. Most are brushes with things but some hurt. She's never without bruises. She won't slow down for anything though.
So instead of leaving this story that started with a cat on a couch my daughter couldn't see on a down note, I'll end with something that happened yesterday.
My son is an avid player of Minecraft. My daughter would dearly love to play, only you have to see to be able to do anything in the game, even if the graphics are intentionally minimalistic. My husband had a thought. He put his Virtual Reality headset on my daughter and brought up VR Minecraft. He handed her the two hand controllers and put her in his spinning office chair. I came downstairs to my daughter excitedly telling me, "Mom, I'm digging in the sand. Look, do you see the water?" I watched her dig, drop pigs in a hole, fly up in the sky, find her way back to where she'd been digging, navigate the controls with her hands. She could see. I don't know how she could, but something about how the game was showing itself to her on the headset let her see more than I thought she'd been able to see for a long while.
It's not a solution, but it's something she can see and in a world where she can see so little, I'll take it.
In conclusion:
There is so much that's happened in the last six years that it's hard to sum up in only a few pages. I focused on the medical here and not the social and emotional health of my daughter, as well as how her father and I personally dealt with everything that happened. And also her brother, who was also affected by events as they played out. That, perhaps, will be a story for another day.
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