26:1

On our way to Detroit yesterday I phoned ahead to say I hadn’t gotten a call for my daughter’s OR time the next morning.  There was some confusion on the line and I got a call back a few minutes later saying that Dr. Trese wasn’t doing surgery tomorrow, he was in surgery today.  Not only that, my daughter wasn’t scheduled at all for either on Monday or Tuesday.  We were close to six hours into our drive, had coordinated child care and had planned an entire trip to find out we had no scheduled appointment for the following day or any day in the future for that matter.

I started crying on the phone to the very nice lady, Cat—which is unlike me, but I suddenly couldn’t handle the stress.   She said to hold on and she’d call me back shortly, she was going to get Dr. Trese between cases in the OR and find out what his plan was.  It was only a few minutes later when my phone rang with Cat saying she’d gotten lucky and caught him between cases.  He said an in-office appointment was fine and to come in at 9:00AM and he’d see us then.

To tell you I was mollified by this and was not upset would be a very large lie.  I was angry.  I was scared.  I’d been watching my daughter’s remaining vision in her left eye dwindle and had yet to see her use the right eye at all.  My husband and I were hoping to get detailed information from an EUA to take back to our doctors at Duke so we could coordinate the overall plan for her vision recovery.

Before we go any further, let me say I think things turned out fine today, but at the time it seemed like we were driving twenty-six hours for a one-hour office visit—an office visit I didn’t think would give us much information.

This morning we did see Dr. Trese and prior to that we saw one of his Fellows, Dr. Thomas, whom my daughter likes a lot.  Dr. Thomas came in to check her vision and talk with us.  He remembered my daughter’s “cool shoes” from last time.  Both Dr. Thomas and Dr. Trese were able to get a good look in her eyes.  We had an opportunity to talk at length with both doctors and they gave us a lot of information on what they can see currently and what we will hopefully see going forward.

We were concerned about how much time my daughter should be lying on her back with the heavy PFO in her right eye. What activities were not okay and what was fine for her to do? Also, did they have tips on keeping a four-year-old calm all the time?  (Good luck there, folks.)

The PFO does move around as she moves and that is a good thing overall, not completely bad.    As it moves over the back part of her eye where the retinal folds are, it is gently working on flattening things out. Taking periods of the day to lie down on her back will help but it’s not necessary to lie flat all day long. And yes, children do move around a lot and are highly active.  The danger of a leak of the Silicone Oil and PFO is low, but lower activity is better where possible.  Getting water into the eyes from a bath is fine, although avoid splashing battles.  No pool for a month post-surgery.

How long will the PFO remain in her eye?  Dr. Trese’s plan is to have it in place for at least three months.  My daughter has gracefully transitioned from a life of sleeping in a ball or on her stomach to sleeping on her back.  I continue to be in awe at her ability to willingly adapt in the face of all her personal challenges.   In relation to the PFO, there are differing opinions on how long it’s safe to remain in the eye.  The specific formulation Dr. Trese put into my daughter’s eye is one that he said is safe to remain for longer periods.

What about the pressure in her right eye?  Is it maintaining?  Has the Healon permeated out?  From a manual inspection (Dr. Trese pressed gently on her right eye) he believes the pressure is maintaining well.  It’s unknown how much of the Healon remains in her eye today as the Healon is clear and even under a microscope is difficult to distinguish.  It is likely still in place as the ciliary body didn’t appear to be functioning well prior to surgery.

Dr. Trese said everything he could see today looked encouraging.   He thinks some of the retinal folds may have flattened out even from when he saw her post-surgery two weeks ago.  He noticed her lens capsule has begun to opacify.  This is okay if it leaves the central part of her vision field clear but is something they will monitor going forward.

We asked about glasses and/or contacts.  He said they won’t be very useful right now while the retina in the right eye is healing.  The retinal detachment caused damage to the outer segments of her rods and cones.  They can regenerate over time, but at only two weeks post-surgery it’s early for her to be showing much visual improvement.  He said at this time it would be challenging to determine a prescription on her eye because they can’t a do retinoscopy or get refraction on the eye well.

We told him about the colored light tests we’d done in the dark. He said the ability to see, track and tell the color of a light is an excellent sign and we should keep working on the eye with bright lights to help the cells as they begin to function. He mentioned looking up Pleoptics which utilizes bright lights while protecting the fovea to stimulate visual pathways.  He said conclusions are unscientifically proven but it might be something we could try.

We discussed her left eye and how we believe the vision is diminishing in it. As a few observational examples, she has begun to be more careful in navigating unfamiliar spaces. She also isn’t able to discern large things around her, such as trucks (or no trucks) beside the car. She loves the pool at our hotel and noticed it immediately every time we walked by it on our last two visits. This time she didn’t notice it the first or even second time we walked by. We had her play the game, “where is dad?” (who was standing ten feet away) and even then, didn’t notice the pool. When we asked her if she saw the pool she looked around and saw the windows and then had to peer in to confirm it was the pool.

Dr. Trese said to monitor her visual ability in the left eye and when he does the EUA on February 1st depending on how things look he will potentially inject Healon behind the lens in the hopes of increasing the pressure. He doesn’t want to do anything terribly invasive until he has a handle on how the right eye is doing.  The injection of Healon may help reduce the retinal folds given that they may be compounded by her low ocular pressure. He said retinal folds from hypotny usually include the choroid but in her case, her choroid wasn’t expanded and didn’t show thickening when they did an ultrasound.  If so, the addition of Healon might help stop the deterioration in her left eye.

So for now we wait for another month and hope the right eye begins to show improvement and the left eye remains stable.  We’re back in the car, another six hours into our drive but this time e’re heading home.  It’s a been a long trip for an hour office visit but I am so grateful for the care my daughter is receiving.  

The Big Boy Update:  My parents are watching my son while we’re away.   This morning he got up and told my mother, “my penis is sticking straight out.”  My mother without even bothering to look down said, “I think that’s a sign you need to go to the potty.”  He turned on his heel and headed off to go find out.

The Tiny Girl Chronicles:  My daughter has been enjoying listening to music with her new headphones from Christmas.   She was asking us about the songs as they came on and getting excited as some of her favorites came around.   Suddenly she said, “this has wack-a-mill-a-cull on it!’   I had to look at which song it was.   It was “Uma Thurman” by Fallout Boy.   There is a line in the chorus that repeats “work a miracle”.   It was apparently the song’s name to her.