WOW it's been a long time since I sat down and started writing. Life has had us on our toes here. Someone turned 1!!!!! We had a 1 in a Melon birthday, the weather was perfect and we had all of Will's favorite food. Couldn't have asked for a better birthday! I recently took a promotion at work which has me back to full time hours for the first time since Will was born. I work in the office several days a week and at home several days a week. Will occasionally goes into the office with me and is always a good boy!
While all of these big things were happening I started to notice a change in Will's eyes, in particular his pupil. It seems like there was a haze in his pupil. Ever so slight but there. Like everything with Will's eyes I assumed it was likely normal for his eyes being as abnormal as they are. At the time I just made a mental note and continued on with life. As time went on I noticed it was still there and maybe even worsening. I decided it was time to text Dr. Sears. I sent him a photo and description. My heart sank as he quickly text back that it was cataracts from the silicone oil.
Cataracts..... We knew that would happen but we were told not for at least a year after surgery and it hasn't been a year! My first thought and fear was that my baby's
beautiful eyes will turn white and the world won't see his beautiful blue eyes! I just felt devastated in that moment sitting at my desk at work reading this text. Coworkers were coming in with issue/problem/concerns all day because that is my job after all but I couldn't help but think and compare the minuteness of their issues compared to the news I just received. I know that isn't right. Just because I was going through a lot doesn't diminish the issues and concerns of others although that is hard to remind yourself in the moment.
I then asked Dr. Sears if the cataract would eventually cover the iris and turn the entire eye white? He said no..... This surprised me as I thought cataracts covered the entire eye and made the entire eye white. I quickly realized how little I knew about cataracts. So were else do you go but google to learn more.
I quickly started reading whatever I could find about cataracts. Cataracts effect the lens. they cloud the lens which sits just behind the iris. This is why while the pupil becomes white the Iris does not. In a normal eye the cataract is first noticed through blurry or clouded vision. There is treatment for cataracts through removal. Removing a cataract meaning removing the lens and replacing with an artificial lens. With Will not having sight there is no reason to remove the cataract other than cosmetic. Even then our surgeon would not justify putting Will through another surgery just for cosmetic reasons nor would insurance likely cover it. This is our new normal.
While cataracts are usually cause by old age many other things can cause them. Obviously genetic conditions, silicone oil or other manmade substances in the eye, eye surgery and any eye trauma, excessive sun exposure, diabetes, and smoking have also been known to cause cataracts. Once I read up on the subject it seemed less scary and fairly straight forward. However if click the image tab on google knowing that removal is not an option proceed with caution advanced cataracts are not pretty.
Knowledge is power! know that I felt at peace with Will's cataracts I know wanted to know more about the oil in his eyes. This is where a new set of fears took over! The first sentence that popped up on google regarding silicone oil in eye "Silicone oil can lead to complications affecting nearly all ocular structures." Oh my I immediately thought to myself why didn't I research this sooner, and why in heavens name did I let them put this crap in my sons eye?!
Silicone oil is used in severe retinal detachment cases and it stays in the eye until surgically removed. The alternative to oil is gas bubbles. While safe gas does dissolve over time and comes with more long term positioning requirements. When the vitreous is removed something has to fill that place in order for the retina to remain attached. In the cause of children oil is the only feasible option. While I can look back now that Will has no vision and say it wasn't worth it, at the time we had to try.
One of many downsides of oil is cataracts. Other complications are as follows; keratopathy, glaucoma, chronic hypotony, oil invasion of the retina and optic nerve. While some of these I was already familiar with other are completely foreign.
Keratopathy - blister like swelling of cornea. symptoms are mostly vision related but obviously we don't have that to worry about. It can also cause feelings of foreign bodies in the eye.
Chronic Hypotony - low intraocular pressure. This can lead to damage of the retina, lens and cornea. Again most concerning symptom of this is vision loss.
Oil Invasion - This is cause for concern! as I was reading again it talked about vision loss but then there are chances of the oil traveling up through the optic into the brain. I stopped reading there as I can guess that's BAD!
One thing always leads to another with this disease. My mind never rests of what could happen next. This disease has taught me if it can happen it will so I just try to be as prepared as possible. I know you can be ready for everything but I live knowing anything can happen with the diagnosis. It is exhausting! I can only pray and hope for now further complications as I always do.
Will working hard with Mom!
As always thanks for reading, please like and share if you found this helpful
