Edema

My daughter didn’t have eye surgery today, which I suppose is a good thing.  Less surgeries on the eyes as a whole is a better thing.  But something is causing her to lose more vision.   She’s got very little and she is losing a decent portion of what she’s got left.

Recently her pressure was checked in the OR and it was high, which is highly unusual for her because maintaining pressure has always been her problem.   With it now high it would indicate her ciliary bodies have regenerated and are producing fluid, but we didn’t know what was causing the high pressure, and if that pressure was also causing the vision loss—and most importantly, if the vision loss was permanent.

Over the past several months we’ve decreased the steroid drops my daughter’s been using for close to three years now.  At one point it was up to twelve drops per day.   With the new high pressure we moved forward with reducing and then stopping the steroid drops.   The good news is we’d already been dropping the frequency of drops for a number of months.  We finished the steroid drops last week.

Dr. Trese had a suspicion that my daughter had edema (swelling) in her left eye.   He did a dye test to see if dye accumulated in her eye later in the retina and macula, which it did.   This swelling in the macula can be treated with drops…only they’re the drops we just got off of.  The drops that may be contributing to the high pressure.  

There is another option: an NSAID drop that will hopefully reduce the swelling over a period of weeks.   But it isn’t covered by insurance.   And it’s—are you ready for this—expensive.    But we got the drops and are using them more then the recommended maximum times per day because there is some evidence that may help more, Dr. Trese said, and we’re not ones to miss an opportunity for a possible better outcome.

On the good news side, the pressure in both eyes is normal now.   We’re going to keep her on the two pressure reducing drops for now and check back in the future.   We name the drops at our house.   We’ve had Pink and Red for years.   We recently added Blue and Purple for pressure and as of today, VEG, or Very Expensive Grey.

The high pressure may be a result of all the debris she has in the front of her eyes called ectropion uveae.   It’s the presence of pigment cells from the iris.   Her irises had a massive damage done to them with the initial infection that precipitated her vision loss.   All of that debris can block the drainage within the eye.   There are things that can be done to help this, but for now drops make the most sense until we find out more.

In other positive news, Dr. Trese said if there was anything that was going to go wrong, this was about the best “wrong” we could have.   So there’s that.

As Dr. Trese was leaving to go back to the OR he said, “her eyes are so complex and unique I think if someone were to understand everything going on in them they shouldn’t have to do their fellowship.”   That’s saying a lot.

The Big Boy Update:  My son went to a baseball game last night.   He had a good time and today decided he wanted his own baseball jersey.   So he got his brand new, Imagine Dragons white t-shirt and a black sharpie and added some vertical stripes.    My husband wasn’t thrilled.   I thought it was sort of creative, but if I’d been home when it happened I might have felt differently.

The Tiny Girl Chronicles:  On the way back to the hotel from the hospital today, my daughter asked me when it was that she could see out of her right eye.   I told her before she was four.   She said she didn’t remember it at all.   The she said she wanted to go back to one or two or three.   I asked her why, thinking it would be because she could see more, but she gave the answer I realized her play therapist wouldn’t have been surprised at all about.   She said, “back when there were no doctors or hospitals.”