January 15, 2015: Cataract Surgery and Complications

On January 15, SP went in for cataract surgery. I was so afraid that she would balk at going in due to how unpleasant the recovery was from the band keratopathy surgery, but children are simply amazing. We had told her that the surgery was needed and it wouldn't hurt as much and she accepted it. Brings tears to my eyes to think how much are asked of children and how they bravely face it.

We also got lucky, SP's brother J-Man got pink eye a week before her surgery so we spent that time keeping them as separated as possible and disinfecting everything in the house - it paid off and SP did not contract pink eye and her surgery went as scheduled.

The whole family traveled up for the surgery, so we didn't take any wrong turns this time. I went back with SP to the pre-op area and we didn't have a long wait, just enough time to enjoy some cartoons.

Surgery took under 2 hours and all went very well. The lens came out, even going into surgery there was a slight chance that her lens could be saved, but it was better to have a new clean one put in. Funny now we have a little card with the serial # for SP's lens to add to her medical records.

Post-op was a pretty quick experience and before we knew it we were ready to take SP to the hotel. With an early morning post-op appointment it was a better option to stay in the area instead of heading over an hour downstate to home.

SP got sick once on the way to the hotel, I blame too much Icee! And once ensconced in a big hotel bed her diva attitude came out to shine. Little girl wanted Chick Fil-A and cookies and sleep? No! she wanted to watch cartoons.

The night was quiet with no issues and we were up early for her appointment which went very well. The patch came off and her vision was already improved over what it was at the last exam.

SP's lovely night guard

Things were going well...or so we thought,
On February 10, 2015 we had another eye exam and while her vision was improved to 20/50 and we were down to 1 eye drop a day we were all caught off guard by the band keratopathy's rapid regrowth. The inflammation from the cataract surgery set it off, but there is nothing we could have done differently, they had to remove the band keratopathy to see the cataract fully and the cataract surgery needed done so she could see again. We were so hopeful of having a few years before the band surgery had to be repeated.

March 4, 2105 we had the exam that started the roller coaster of stress and worry that we would ride for the next two months.

The JRA was flaring up in SP's eye again causing inflammation, it was already affecting her new lens. Her vision was almost nil in that eye again. SP was put back on steroid drops in order to get it under control. We were hopeful it would settle down and then we would see what damage it has done, they can do a laser treatment to fix the lens without having to replace it.
But like her Rheumatologist had already warned us this will be her issue with JRA, and sadly it's like a dog chasing its tail, until the disease is gone or completely quiet we are going to be going around and around with eye appts, drops, surgeries, etc...

Then two days later I received a call, we had to knock that inflammation down and fast, her Rheumatologist was starting her on oral steroids.

March 17, 2015, we were extremely thankful for a good eye exam. Inflammation was going away, still there and the lens was still "sticky" but much improved since last time and SP could now see out of that eye again! We're staying with the steroid eye drops, but will begin weaning the oral steroids down slowly...good thing because they are really affecting her. For a child that takes forever to gain weight SP has gained about 2 lbs in the last week, her pants are getting tight on her and she is always hungry and wanting to eat. Her face is puffy and she is super emotional.

We would also start eye patching during the evening and on weekends. The hope was for the JRA to go quiet again and if not then she'll be put on another drug to keep the inflammation away and the eye healthy. He did bring up another surgery in the future to scrape off the band keratopathy, but at that point I was quite hesitant to do that fearing more inflammation and back into this horrible cycle we go again.