We saw our PO very often in that first few months of Tate's life. We were able to hold off on his first surgery until he was four months old. It was October 9, 2006. I remember the date because that's where Todd and I spent our 7th wedding anniversary. Our PO and a Retinal Specialist performed a vitrectomy (coring out the scar tissue to "clean up" his eye, and a lensectomy (removing the lens with the cataract). Tate did fantastic with the surgery. He wore a big metal shield over his left eye for a while, but healed up nicely. The hardest part was putting him in arm braces for the first week or so to prevent him from messing with his eye. After healing from his surgery, we only saw our PO periodically to make sure everything was well with Tate. We started him in the Early Intervention program with our local CDSA (Children's Developmental Services Agency) and they set us up with a wonderful case manager, and had a therapist come once a week to work with Tate on fine and gross motor skills, and special things for kids with monocular vision, like his depth perception issues. We continued to see our PO and we were just to watch for the eye "deflating" or any signs of pain. But Tate was doing fantastic...
Until this summer. A couple of days after we returned from our summer vacation, Tate was sick... vomiting, and generally not acting himself. He told me that his eye was hurting a little bit, and he was rubbing it a lot. I called the POs office, and we were able to get in that day. Tate's eye pressure was supposed to be 12-14. It was 40. The PO said that his eye was giving him more than "a little" pain with pressure like that. That's when we first realized what a high pain tolerance our little guy has. The vomiting was from the high pressure in his eye, so they immediately started him on drops, right there in the hospital. He had neovascular glaucoma. This was a bad sign for a kid with PHPV. I was also told that Tate had band keratopathy, which is calcium being deposited on the cornea, occurring in a band pattern. That's the day the doctor first told me that his eye was beginning to degenerate and it would eventually have to be removed. I will never know why I didn't think to have Todd go with me to that appointment. It was a difficult drive home, blinded by tears once again.
We had been told that we didn't have to do anything right away... we were going to see how the drops worked out for him, but were warned that the drops typically eventually become ineffective. We were told that Tate's eye could last weeks or a decade before having to be removed. We just had to wait and see. Typically with a degenerating eye, the pressure would get really high (as it was), then drop really low, and the eye would begin to shrink, and have to be removed.
On our yahoogroups PHPV support group, I had heard about a world-renowned specialist in Michigan, a little over an hour from where my mother-in-law lives. He is the go-to guy in this rare world of PHPV. People literally fly from around the world to come see him. When someone talks about removing your child's eye, it's hard to just take their word for it and not question it at all. We trusted our PO completely, had every confidence in him. I think the biggest reason that we went to see Dr T in Michigan is that I didn't want Tate ever to feel like we didn't do everything possible to save his eye. Dr T concurred with our PO completely and said that when the glaucoma was out of control, it wouldn't be a bad decision to remove the eye. He said there are some painful treatments we can try to treat glaucoma that might prolong the life of the eye, but he wouldn't blame us for not wanting to put our child through that pain in the hopes that science would develop something to help him regain vision while we were stalling. We also found out at that visit that Tate's right eye (yes, his GOOD eye) contains five meridional folds in his retina. These are basically holes in the retina that make it much easier for the retina detach with an impact. We're not signing him up for those boxing classes after all, I guess. :)
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