Coats' Treatment - Laser Surgery

(To read the story from the beginning, see the first blog and then read up)

In Dec 2003, we met with Dr. T at the Childrens Hospital for the first time. His recommendation was laser surgery to seal off the leaking blood vessels. After that, it would be a matter of waiting for the accumulated cholesterol (exudate) to (ideally) be absorbed into the body. He also told us that we should start "patching" after the surgery. Joey is a hawk-eye with his good eye, so basically, his brain had "turned off" his Coats' eye and compensated with his good eye. The patching would "train" his brain to begin using the Coats' eye.

So, with an actual diagnosis and a game plan, Craig was very encouraged after this appointment. I, on the other hand, felt a little depressed. To be honest, my emotions had been all over the place since this all started. I'd been fearful, relieved, nervous, sad, encouraged, depressed, etc. I felt sad that Joey's eyes weren't perfect. But then disgusted with myself that I wasn't overflowing with joy since it wasn't retinoblastoma. Craig told me that I was happy it wasn't retinoblastoma, but still sad that he had Coats, and that those conflicting emotions were confusing me. That made sense.

We scheduled the surgery for January. We had decided to wait until after the holidays, since Joey was just LOVING Christmas that year. And since it was cold and flu season, we had to pretty much live in a "bubble" for three weeks. If he got sick, they'd have to reschedule the surgery. So, we were homebound, and if we did go anywhere, we made sure we had a steady supply of Purell.

The surgery was pretty much the same routine as the exam under anesthesia: We arrived at the hospital, checked in, got the little purple pajamas, waited in the toy room until they called us up. Once again, I went into the OR and held him until he was out.

At one point during the surgery, Dr. T came out and asked us if we wanted a steroid injection. As I understood it, this would speed up the break-up of the exudate. We talked it over briefly and agreed to go ahead with that. When it was over, Dr. T said it all went well. In the recovery room, Joey had his eye patched and taped and was pretty sleepy.

On the drive home, he woke up and touched the patch and started to cry. I explained to him that there was "medicine in his eye" and that the patch would make sure the medicine stayed in his eye (not exactly the truth, but how do you explain laser surgery? I felt this was easier for him to grasp) I explained that he would have it on for the rest of the night and that in the morning, we'd go so the doctor could take it off. The next day, Dr. T took off the patch and took a look. His little eye was red, but Dr. T said everything looked good. His eye was very red for about a week. We were given some drops to put in his eye - one tube for the morning and one tube for the evening. He hates drops, and I'd struggle with him to get them in his eye. I finally got wise and would wait til he fell asleep and then go in and open his eyes and put the drops in for his evening dose. That way, I only had to struggle with him for the morning drops.

FEBRUARY: At our follow-up appointment, Dr. T seemed encouraged that the stuff in there was starting to decrease. He told me to start patching him 2 hours per day. The first time I patched him, I could see his little eye all over the place, struggling to focus. But he could maneuver around ok, even ride his bike in the back yard. I was surprised.

MARCH: Dr. T said it looked like the exudate was still decreasing. He was surprised and pleased to hear that Joey could maneuver around as well as he could while patched. He told me to increase the daily patch time to 4 hours.

MAY: Dr. T said the stuff in there was only SLIGHTLY decreased. He would give it six more weeks, and if there was no significant improvement, then we should start thinking about another exam under anesthesia to see if there was any more leakage from the blood vessels. For the next six weeks, Craig and I fasted once a week and prayed for Joey to not need another surgey.

JUNE: Dr. T said Joey's eye had improved! Yay! BUT..it was still possible that we'd have to do the exam under anesthesia again eventually, but as long as it was improving, we'd just watch and wait.

AUGUST: The exudate was continuing to decrease. Joey was checked to see if he needed glasses and we were told that his vision had improved slightly, and that he didn't need glasses for the vision he does have. From what I can tell, it seems that Joey has areas in his field of vision that he cant see. He struggles to focus on things. On other websites, I heard it described as "donut" vision. We think he has peripheral vision. We'll won't know what he can see until he's old enough to explain it to us.

NOVEMBER: Dr. T said that a lot of the exudate had decreased, but that he still had a big blob of cholesterol sitting on his retina. Which I thought might mean that as that blob breaks up, Joey's vision might improve greatly. On the other hand, that cholesterol sitting there could be toxic to his retina.

2004 was quite a year.