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.

August 20, 2015: PCO Laser and Eye Muscle Surgery Day

Surgery Day arrived much faster than I thought it would, but then again most of the summer has flown by as well.

All routine, we drove up, checked in, got called back, SP kissed and gave hugs to Daddy and J-Man and back we went and waited..and waited...and waited some more.

Actually we only waited around an hour, during which poor SP asked to use the restroom about 4-5 times, that was the only sign of her nervousness. SP is one cool little lady.

Then it was time to go back for the posterior capsule opacification (PCO) laser procedure, the one she had been dreading due to her being awake for it. Can I just say that she impressed not only mom but the entire team back there! She sat still, followed directions and it was over within minutes. I'm serious, it was very quick.

And then came the time for me to kiss my sweet girl, whisper, "I love you" and she was drifting off to sleep.

After I changed out of my surgery gear, the anesthesiologist called it a bunny suit minus the ears, I located my DH and J-man, dropped off SP's bag of clothes and went in search of lunch.
Only when returning from a very quick lunch did I notice I had lost my fitness tracker. The bracelet had been popping open and I think when I pulled off the bunny suit it went with it.

Thankfully surgery did not take long and we were back in a little room talking over how everything went, drops, restrictions, etc...
Everything went wonderfully!
Though I admit I didn't really care for my husband and the Dr joking about the laser procedure being similar to a video game...whether that is true or not. Pow, Pow, Zap :/

Restrictions were simple, don't get anything nasty into that eye:
no pools/waterparks
no sand/beaches
no mulch/playgrounds

Shortly afterwards Daddy was able to go back and see our little girl, then he swapped out so I could go back.

Overall SP was doing great! No complaints of pain, just a tad groggy sipping away on an Icee (the hospital has an Icee Machine right in the post-op area) Got to catch up with a super sweet nurse, whose son is also 7 and sadly also suffers from JRA/JIA. We met her during SP's band keratopathy surgery back in November 2014 and have had an opportunity to come across her a few times at the hospital.

Once SP was moved to a different area of post-op things took a downturn, she insisted that she needed the bathroom- with SP and her nervous bladder this didn't surprise me, but she was very insistent about needing to go NOW. She was nauseous and wanted to hit the bathroom- poor girl. She ended up getting sick 3 separate times, and the last time she also got a nosebleed. Anesthesia was paged and the Dr came over shortly.
-We have always been thankful to have this great children's hospital in our state, but even with Delaware being a small state the drive is still a good hour and 15 minutes....on days without rush hour or beach traffic ....and the Dr was concerned about us being that far away in case of complications so there was talk of us going over to the Ronald McDonald House. Dr Salvin was then paged, consulted and then the decision left up to us. Honestly I didn't want to make that call. I wanted the doctors to tell us what to do. DH and I talked and we agreed to take SP home.

We left the hospital and got to McDonald's about 5 minutes away (we felt dreadful but it was after 5 pm, we hadn't eaten for hours and we were facing rush hour traffic on the way home so we had to get food for the rest of us) while in the drive-thru poor SP threw up again :/ Thankfully we got everything cleaned up and she fell asleep on the way home.

Rush hour traffic was beyond terrible! So thankful SP slept because we barely crawled along for a solid hour. Once home SP perked up and started demanding food- sorry girl crackers and Gatorade had to do until we knew that little tummy was settled.

By the next day SP was up and ready to go! We could already tell a big difference and best news of all? no pain!

Saturday, just 2 days after surgery SP was ready to go shopping.....little girl is a shopper just like her Daddy.

Tuesday we had her follow-up eye appointment and it went great! Her eye is healing well, no signs of inflammation (YES!) and we could discontinue the antibiotic/steroid eye drop and lower the prednisone drop down to 3X a day and then continue to slowly wean that one down. Follow-up is Sept 15th and we will talk glasses ( or not!!!! she might not need them!) then :D






Wednesday was SP's 7th Birthday and not only was little girl feeling great but her eye improves in appearance every day.

August 5, Joint Appointment: The Good, The Bad and The Sad

August 5, 2015, we had an evening rheumatology appointment, we picked up Daddy at work, marveled and thought some not so nice thoughts about rush hour traffic, had a McDonald's pit stop and made it up to the hospital with time to spare.

The Wall is always a must and yeah, it's pretty cool

Also time to look around the gift shop and hear the kids ask for things that they absolutely do not need...but that I'm still tempted to buy! Who doesn't want to snuggle with a 5 foot long bright green stuffed alligator?

The kids got to enjoy the sight of two baby pigeons in their rocky nest outside the window of the waiting area.

and then we got called back.

We love our Rheumatologist, Dr Rose, he is a man perfect for his job. Even when he's telling you things you don't want to hear, his manner is so gentle that it does sting just a tad less. You know he's good when the kids are eager to see him and exchanged handshakes and high fives.

The Good: We have been concerned over SP's gait, she just seems to roll her ankles in or even do a mincing type of run.....Daddy says it's her "girly run". Well the verdict is she's fine. Nothing physically wrong just she doesn't fully extend her feet when running.
Her knees continue to look good, from time to time she complains of them hurting, and since the one flare-up we have been hyper-vigilant in checking them over.

The Bad: Her right wrist is puffed slightly, possible sign of inflammation. Her neck is not showing full range of motion, when she looks way up she arches her back to do so. Xrays were suggested along with a follow-up in Sept. He doesn't want to start her on anything because of how close to eye surgery (August 20th) she is. This will give him time to look at the xrays and reports, time for surgery and healing and time for us all to regroup.

In typical SP fashion she took it in stride and put a positive spin on things. "Right wrist? Good thing I'm left handed!"
Man I love that girl and wish I could look at things so optimistically!


The Sad: Knowing that more joints are affected, and knowing more limitations will be placed. As much as we want the sky to be the limit for our children and their dreams, the reality is living with JRA/JIA and the damage it does to joints is long-term and will affect a child the rest of their life. One arthritic toe isn't a big deal. Having the cataract and all the eye procedures? Well SP will never be an Air Force Pilot....not that she has expressed a great interest in such things, but at one point when driving past the AF Base that question did indeed come up.

Gymnastics is another things that SP will not be doing. Basic tumbling with friends at birthday parties.....SP, herself, has requested her upcoming birthday party be at GymStars, and we had agreed...and then postponed due to eye surgery and the restrictions that will place on her. We will be partying hard, for sure, little girl deserves it, but she will never be doing handsprings and leaping off balance beams.

Seeing your child strap on a lead apron over their pelvis and happily hold still, smiling the entire way through xrays with trusty Eeyore by her side. Knowing the dentist wants xrays in October and putting them off because you want to space out the surgeries, xrays, procedures, in hopes of staving off any potential problems or side effects. SP's hair is still very thin, I wonder if from repeated anesthesia.

Knowing summer vacation is dwindling and wanting to squeeze in as much fun as possible before surgery and recovery take over the last remaining week before school starts.

I long for remission and some peace. Agreeing with your child that this is not unfair and flat-out stinks is one thing...but I want to scream, I want to blame myself...something I did while pregnant, something, anything! but why my girl? Like most parents I would gladly take this all on myself if I could. But I can't.
I hope and pray that SP's joy is never dampened by this and that she always remains the cheerful, sweet character that is so her!