No Bad News

I think this is the best title I can come up with for today’s post. Or maybe “No Worse News” would be more accurate but since I’m an optimist, I’m going to go with the first title.  Today, my daughter’s retinal specialist looked at her for the first time under anesthesia since he operated on her right eye on December 19th.  My husband and I have been preparing for today in multiple ways so that we could give Dr. Trese what we hoped was accurate, non-biased information on how my daughter’s vision has been progressing/changing since we last saw him.  The thing is, “accurate and unbiased” are both tricky things with a four-year-old who can’t and won’t tell you what’s going on.

That meant we had to base everything on our observations. We think she can see light and colors fairly well in the right eye, possibly knows directions where things are more light than other areas. The left eye seems to be going slowly downhill. This is a regular discussion because we’ll see a good sign and get excited things are improving and then see five worse things and feel our evaluation of slowly degrading vision is probably more accurate.  This morning we shared our thoughts with Dr. Trese before he took my daughter into the operating room.

There was a lot of information when Dr. Trese came out so to break it down by eyes and talk about the right eye first.  Her natural lens was removed on December 19th. It was spherophakic, meaning more like a sphere than like an almond shape. Removing the natural lens isn’t a tragedy, people have it done all the time. Anyone who has had cataract surgery has had their natural lens removed and an artificial lens implanted.  The way her lens was removed was via a hole incised in the back of her lens capsule. Think of the lens capsule as the shell coating on an M&M and the chocolaty part inside as the lens. They removed the chocolate part and left the lens capsule in place.  (As an aside here, I don’t have the chocolaty lens part in my eyes any more and I see just fine with artificial lenses.)

During the December 19th surgery, Dr. Trese put Silicon Oil and PFO into the back portion of my daughter’s right eye. The Silicon Oil helped increase the pressure to a normal level and the PFO was a heavy substance that would act against the retinal folds in the back of her eye—provided she spend time on her back so that it could roll onto the posterior part of the retina.  My daughter has been my absolute hero for spending so much time on her back.

There was a danger the PFO heavy substance might propagate into the front her eye, entering via the hole in the lens capsule from where the natural lens was removed. My daughter, again, was careful to never lean all the way forward or sleep on her stomach, or lie face down so that the danger of migration was as low as possible.  (Our thanks go out to her teachers at school for all their accommodations in helping my daughter find alternate ways to work more upright.)

Today we found out none of the PFO had moved into the anterior portion of her eye.   Dr. Trese expects to keep the PFO in her eye another month, possibly two months. After that point my daughter can do as many headstands and forward rolls as she’d like.

There is a compromise though with the Silicone Oil and PFO.  It can cause opacification of the lens capsule. Dr. Trese had already seen some opacification when we had our in-office visit in January and today he confirmed that significant portions of the front of her lens capsule had opacified. The solution to this is to open a hole in the capsule in the main field of vision (center). This can be easily done, but he wants to wait until next month (his current plan) and remove the PFO at the same time.

It was hard for him to see in the back of my daughter’s right eye because in order to see into the eye, it needs to be clear. On the great news front, both of her corneas look quiet and clear, but he needed to see through the lens capsule into the back of her eye to determine how well the PFO has been doing it’s job.  He drew us a picture and pointed out a crescent spot that was clear in her lens capsule that he was able to see through. From that vantage point he thinks he saw her optic nerve in an area that wasn’t surrounded by folds, which would be fantastic news.

Via a team approach, our pediatric Ophthalmologist asked if Dr. Trese could get a refraction done on her right eye so we could get a corrective lens.   Then, as her retina heals and recovers (we’re six weeks into a four-month process) her brain could make more sense of the terribly blurry world she’s seeing through the right eye. They tried, but due to the clouded lens capsule they weren’t able to get a meaningful reading.

Tomorrow morning we’re going to go to Dr. Trese’s office where they will perform an ultrasound on her right eye to get a view of what’s happening behind the clouded lens capsule. For now and in summary on the right eye:

•  The pressure in the eye remains stable at normal pressure
•  The PFO will stay in place one or more months
•  It looks like it’s been doing it’s job well
•  The lens capsule is going to be left as is until the PFO is removed and then Dr. Trese will open up and hole in the front so that she can see much better
•  At that time they will get a refraction done on the so that a corrective lens can be made so that what she sees is clearer.

Next, let’s talk about the left eye, which has not had any surgical intervention thus far. The cornea and lens capsule in her left eye look fine. She has a spherofakic lens, which remains in place. Her functional and form vision is coming almost exclusively from her left eye at this time. The pressure has been unmeasurably low for many months. It appears the ciliary bodies are damaged and aren’t producing the normal amount of fluid. She also  has significantly detached retinas bordering on the sharpei dog-type of wrinkly. There might be a large retinal tear, causing a portion of her visual field to be permanently lost. While the right eye was being addressed, Dr. Trese didn’t want to do anything to the left eye unless necessary because doing do might disrupt the vision she has remaining.

Today we discussed prior to the EUA the possibility that Dr. Trese would inject Healon into the posterior portion of her left eye to increase the pressure.  This would hopefully help the eye recover. This was based on our observations and concern that the left eye was fading in it’s visual ability. We didn’t want him to have to do anything, but we were concerned that doing nothing might be worse. When Dr. Trese came out to talk to us he said he thought her left eye had improved, possibly by even 10%. He said it was a better course to do nothing and to wait another month and re-evaluate if we didn’t have to do something that wasn’t side-effect and risk-free

I am thrilled to hear her left eye may be recovering on it’s own. We talked about the ciliary bodies in both eyes and he believes whatever the initial insult (mystery of the year) was, was something that acted on the cilliary bodies first, which caused the reduction in pressure and ultimately triggered a cascading effect on both her eyes.

The Big Boy Update:  At Bring Your Parents to School day on Friday my son was putting together a puzzle of North America.   He was looking at one piece rather intently and then said to us, “Cuba looks like a Jet Ski.”

The Tiny Girl Chronicles: Swimming!  My husband and daughter are happily in the pool at the hotel which is just on the other side of the wall to our room.  I can hear her happily screaming and laughing.  I gotta get outta here and get my suit on, folks!