Right Eye Surgery

Today was eye surgery day for my daughter. My husband and I didn’t want this to happen. We didn’t want to be in Detroit facing a situation in which we had no other choice but dramatic eye surgery to try and save my daughter’s vision, but that’s where we ended up so surgery is what we did.

Of her two eyes, her left eye is her “good” one, meaning she can see out of it whereas the right eye can possibly only see light now because of the overwhelming insult it’s sustained over the past four months. What started it all and what happened to get us here is still not clear, but we know it’s related to her abnormally formed eyes leading to a predisposition for something to happen. Because she gets most visual information from her left eye it was important to keep that untouched for now so today’s surgery was on her right eye.

There is a lot I can’t adequately explain here because, as Dr. Trese casually said, you’d need a five-year fellowship as a retinal specialist to really understand.  So bear with me as do the best I can to give you the gist as I understand it.

The procedure first involved visualizing her eye from the interior via surgical tools. The pressure has been so low in her eye that the initial step was to add gas into it to get a better idea of what was going on. With the gas in place they were able to remove a portion of the vitreous from the back of her eye.

When they removed the vitreous they were able to peel some scar tissue from the front of the retina (they did not go behind the retina at all.)  Good news here is there appeared to be no tears in the retina which would have indicated death of the cells in that area.  Better news is as they worked in her eye, the folds in the retina began to be less-pronounced, flattening out as they removed frontal scar tissue.

They then removed the gas, adding a specific type of perflurocarbon liquid in her eye, PFO, a heavy substance in comparison to the vitreous.  Next they injected silicon oil. As they added the PFO and silicon oil the retina began to unfold more. It’s not complexly opened up, but it opened up a lot during the procedure, looking even better later on as they were finishing up.

To back up in time a bit, the pressure in my daughter’s eyes has been low—too low.  As the pressure decreased in my daughter’s eyes they became smaller. The radiologist doing her recent brain MRI reading even commented how her eyes appeared to be smaller than the scan in September.  Dr. Trese said the folds in her retina may have been compounded in part by the reduction in her eye size coupled with the retinal detachment already present.

I want to circle back to how many substances have now been put into my daughter’s eyes, because it’s impressive.  There was a gas, which was subsequently removed.   Next there’ the PFO, which acts as a coating around the silicon oil in the back of her eye. In the front of her eye she has a Healon polymer solution to stabilize it.  Healon is preferred for contact with the cornea over silicon oil. So my daughter now has three additional substances in her eye, helping it hold itself together and, hopefully, heal and return some vision to it.

During the procedure my daughter’s lens became an obstacle and they had to remove it. I can’t decide if I’m devastated about this or relieved so I’m going to have to side track and talk about her lenses for a bit. She has (had) and almost spherical lens instead of a normal, lozenge-shaped one. The lens is suspended in place by a lens capsule that’s connected all around by zonules. Dr. Trese was concerned her zonules wold be fragile and the lens would become dislodged. If that happened, they would have to remove it.

It didn’t detach, but it was an obstacle to their procedure so they removed it. But is it a bad thing? If you know anyone who’s had cataract surgery, they don’t have their lenses anymore. They were broken up and removed through a small incision in the side of the eye. Unlike cataract patients though, my daughter doesn’t have an artificial lens replaced in the void where the lens was.

It turns out the lens was measurably more cloudy than it was even last week when Dr. Trese looked at it. This clouding would have continued to progress with the hypotony (low pressure) in her eyes.  The question is, can an artificial lens be implanted and/or does she need one?   Yes, one can be implanted  but Dr. Trese suggests it not be done until she’s at least twenty-years-old. The interesting thing is, you don’t need a lens to see. I had read about this several years ago when I had eye surgery so I wasn’t as upset as I might have otherwise been.

Most people don’t know, but I had my lenses removed a few years ago.  I didn’t have cataracts, but I elected to have a “clear lens exchange” for artificial lenses to correct my vision. I’m quite happy with my artificial lenses and should’t need glasses as I get older because my artificial lenses won’t harden, causing me to need reading glasses.

In addition, you don’t need artificial lenses to correct vision without an inter-ocular lens, you can get glasses or contacts that do the same thing. So removing her lens may have been a good step. There are drawbacks though. The lens helps to maintain ocular pressure and, as we all know, she has an issue with low pressure. The other concern is the lens is a barrier that helps keep the silicone oil in the back of the eye (where is needs to stay). In order to help prevent this, they left the anterior (front) portion of the lens capsule in place. While her zonules may have been delicate, her lens capsule was unexpectedly sturdy. The posterior (back) portion of the lens capsule was stuck to the retina in places so they peeled it off and removed what was necessary.

The hope after surgery today is that the retina will settle down under the now-normal pressure in her eye.  She is measuring 12-13 which is a huge improvement from what the zero reading she’s been having for the past months.

Her eye anatomically looks much better now. The silicon oil and PFO should remain in place. The Healon will permeate out, but only as fast as her eye’s ciliary body produces fluid. Dr. Trese believes whatever the original insult was that occurred in my daughter’s eyes, damaged the ciliary bodies and they likely won’t ever return to producing much fluid. With low fluid production, the Healon may remain in her eyes for some time.

Overall, what was done today to my daughter’s eyes was a temporizing process that will give the doctors an idea how her eye will behave with appropriate pressure. As far as returning sight in her right eye, it will be four months until we really know because regeneration of retinal cells is a slow process.

What do we do now that we have a small child with an eye patch on her fight eye? First of all, we need to keep her on her back as much as possible for the next five weeks.  Wait, what?!  I know, right?  I have a new definition of “impossible” in mind.  Unbelievably though, my daughter has been willing to lie on her back to do most things since we were released from the hospital this morning, she’s been commented, “I need to lie on my back” when she remembers.

We don’t have to have her on her back 100% of the time, but that PFO and silicon oil needs to rest on the back of her retina, weighing it down as opposed to pressing on the front of her eye. Guess who likes to sleep facing down?  Guess who spends lots of time leaning forward to eat and watch her iPad? So we have challenges.

But we have solutions too. we’ve ordered a special iPad stand that holds an iPad in place upside down so she can lie on her back and play games or watch videos at the three-inch distance she has to have to be able to see anything with her unpatched left eye. We also were able to recline the chair in the car so she’s fairly close to lying down for our long ride home tomorrow after seeing her doctor in the morning.

And on the personal side of things, we had several comments today that made me smile and tear up. In the pre-op room while we waited for my daughter to be called back, she decided we needed to play, “Ring Around the Rosy.”  She put pages she’d colored in a circle and got my husband and me to walk around in a circle and sit on a drawing when “we all fall down” came around. We were having a great time when one of the nurses stuck her head in and said, “she is such a breath of fresh air.”

The thing that made me cry was an unexpected text message from our pediatric ophthalmologist who has been with us since the day we realized something was going wrong with my daughter’s eyes. She remembered my daughter’s surgery was today and sent her best wishes for a positive result. What doctor does that?  She has been our biggest advocate throughout this whole process and I cannot adequately express our gratitude to her.

The Big Boy Update: My son has an ear infection.  He’s with Nana and Papa and they have been taking care of him. We realized (a bit too late) that they’d gotten a prescription for amoxicillin that he was allergic to. They went back and got a different medication for him before they filled the first prescription.  It was a hassle with a sick and unhappy child and I’m sorry we weren’t there to help.     Other than that, I think he’s having a great time with them. I was just sent pictures of him having fondue toasting the evening with red juice in a wine glass.

The Tiny Girl Chronicles: Before surgery my daughter needed three rounds of eye drops. One older nurse came in for the third round of eye drops and I told her, “she’s good at doing these, hand her a tissue and she’ll help.” The nurse couldn’t believe it when my daughter lay back, held her eye open for the drop and then patted it with the tissue before holding the second eye open. She said, “I’ve been working with Dr. Trese for twenty-five years and I’ve never seen a child do that before. We’re accustomed to needing three of us to get drops in to a child her age.” I told her it was my daughter who decided that was how she wanted to do the drops. I am proud of her every single day.