Coat's treatment - 2nd surgery

January 2005 - Joey's eye had not improved much at all. Dr. T advised us to consider another exam under anesthesia to see if there was any more leakage in the eye. I was ready to go for it. Craig wanted to think and pray about it. Dr. T was comfortable with us taking time to think about it. He told us "If I felt it was really urgent, I'd be pushing you more."

March: Still no change. We decided to go ahead with the exam under anesthesia and possible laser surgery. It was scheduled for April 22nd.

Once again, we lived in a bubble so that Joey would not get sick before the surgery and have to reschedule. However, two weeks before the surgery, he started sniffling. I called the hospital and told them, and they told me they would leave him on the surgery schedule, because sometimes they go ahead with it if it's "just" the sniffles. They explained that they would listen to his lungs and look at his throat, etc, and if everything looked OK, then he'd be ok to go ahead with it.

The day before the surgery, we drove to LA for a pre-op examination. After a 2-1/2 hour wait, we went in for the exam. They said his lungs were clear, as was his throat, ears, etc. They felt he was OK, but they would check him again the following day before the surgery.

On the day of the surgery, they checked him again and cleared him for the surgery.

Up in the surgical unit, Joey was given his "sleepy medicine". After a few minutes, he started getting giggly...and then he just started getting sleepy. The anesthesiology resident came over and introduced himself and explained the procedure to us. I mentioned to him that the last time Joey had had surgery, I was allowed to go in and hold him in the OR til he was asleep. He checked with the attending anesthesiogist, who then came over to speak with us. She said that the policy on that was currently "on hold" for various safety issues. I was Ok with that, because I could see that Joey was getting VERY sleepy, and I knew he probably wouldn't be aware of me being there or not. (Last time, he was a little more alert at this point). They rolled him on the gurney to the OR, and we walked along with him. Right before they took him through the double doors, we kissed him and said we'd see him later. He lifted his head and said "Kiss, Hug!". (that is what he says before anyone leaves the house). So we gave him a "kiss-hug" and they rolled him through the doors.

We went to the surgery waiting room and watched the animal channel. It was a really gross episode about kamodo dragons. They showed them stalking their prey and...well, it was gross. But definitely distracting.

After a couple of hours, they called us up to the recovery room. Joey was sleeping. Dr. T said that the surgery had gone well. Joey did have some more leakage behind the retina, which they lasered. He also has a bit of scar tissue in front of his retina. And he is beginning to develop a cataract. It is not affecting anything at this point, but if it progresses, they can go in and correct it. Dr. T also said that if and when he does the cataract surgery, he can try to do something about the scar tissue. This could be months-to-years away, though. He told us to come back in a couple of months for a recheck. He also gave us drops to give Joey for the next week.

When Joey started to wake up, he was screaming and thrashing around. He was trying to rip off his IV, and trying to rub his eye (it was not patched this time). It took four of us - one person holding each limb - to try to control him. This went on for about an hour...I kid you not. He would scream that he could not see. I told him that he had medicine in his eyes (his eyes were "gooey" from the drops, as well as dilated). I told him that in a little while, when the medicine wore off, he would be able to see. He screamed "I wanna see NOW!" Finally, he tired himself out and fell asleep with his head on my chest.

With a limp sleepy Joey, we stopped at the Hospital McDonald's on our way out. We had not eaten all day, except for coffee and a diet coke. I sat at a table and waited for Craig. There was a lady sitting next to me and she said "Long day, huh?". I hadn't realized that I looked just like I felt! I told her he had just had outpatient surgery. She said her daughter had also had laser surgery on both her eyes - she has "retinopathy of prematurity". We chatted for a little while. She had her little girl with her, as well as a boy in a wheelchair, and a set of twins.

I couldn't eat - which is rare. The McDonald's food just didn't look good - too greasy. The coffee and diet coke weren't doing very well in my stomach. We headed for the car and started our way home. Joey woke up a little, hugged his "doggie" and fell back asleep. I rode in the back seat with him to make sure he wouldn't rub his eye. The traffic was HORRIBLE. Soon, I was VERY car-sick with a terrible sinus headache and an upset stomach from not eating. It was a long drive home. When we got to my mom and dad's house, I just laid down and tried to feel better. I wanted to take care of Joey, but he ended up feeling good and eating and playing. He even came and gave me a stuffed Tweety toy to "hug" while I slept.

Once again, we find ourselves waiting to see what happens in that little eye. Our next appointment is in July. I'll keep you posted.

Safety Glasses...er...I mean "Sports Goggles"

When we signed up Joey for soccer, Dr. T suggested we get protective eye-wear to protect his good eye. I went to Lenscrafters and all they had in the way of sports glasses were something called "Rec Specs". They were big bulky frames attached to a strap. If the strap was not tight enough, the glasses would move around his face. But when it was put tight enough, the frames left an imprint on his face. Because the frames were so large, it seemed as if they blocked his side vision. Of course, we wanted to protect his eyes, and we figured the sooner he got in the habit of wearing them, the better. We called them "Sports Goggles", so he'd feel like he was wearing athletic gear. At soccer practice, we would let him warm up without the glasses, but when the teams played together, he'd have to put them on. It soon it became a routine.

When I saw my little boy running around the field with these bulky tight glasses on, I had to wonder why they dont make more comfy sports glasses for kids. Like wrap-around types that adults wear, except smaller. Surely someone could offer kids something better than thick rubbery frames!?

Before I had gone to Lenscrafters, I had called around to all the sporting good stores asking if they had protective eye-wear for kids and they all said no. But one day, I was browsing around Sports Chalet, and just for kicks went to see if there was any eyewear in the baseball section. Well, I happened to find a whole rack of glasses in the raquetball section. They were made for adults, but when I tried them on Joey, some of them actually fit pretty good. They were lighter and more comfortable. And they were priced at $10-$25! (I paid $129 for the RecSpecs from Lenscrafters). I was so excited! We didnt buy any that day because he wasn't doing sports at the time, but now I know where to go when we need some!

Just a Case Study

When we go to our routine visits to the Children's Hospital, we are usually seen first by a doctor doing a residency/fellowship rotation, and then we are seen by Dr. T. On one particular visit, one of the doctors doing his rotation came into the examination room with a medical student. As we sat there, he talked to the med student about this "case". He told the student that this patient had Coats' disease. And that this patient's pupil "was blown". He stood there and talked to the med student as if we, the parents of this case study, were not sitting there listening. He talked as if it didn't even cross his mind that maybe our entire lives revolved around this interesting case study.

When Dr. T came in, Craig asked him to explain a "blown pupil" . Dr. T looked a little confused. We then told him about the other doctor's comments. He said that this doctor should not have used that terminology because it was not accurate. I guess what the other doctor was referring to was the fact that Joey's pupil had been dilated for six months. Dr. T told us that it might or might not go back to normal. When they had done the laser surgery, much of the damage was close to the nerves of the pupil, so it was difficult to determine exactly when the pupil would work the same again. He said it wouldn't hurt his eyes, but that it might make him sensitive to light. All we could do was wait and see.

I really hope that this doctor was informed about the fact that we were offended by how insensitive he was. I think that ESPECIALLY at a Children's Hospital, a doctor needs to be more sensitive to people's feelings. That's not just a manila folder with an interesting case study. That's information about my precious little boy.

That evening, Joey's pupil suddenly started working again. Weird timing, huh?