My husband and daughter flew to Detroit yesterday for an office visit with her retina surgeon today. There were flight delays resulting in them getting in after midnight last night. They’re on the way home now after seeing Dr. Trese for about eleven minutes. That’s a pretty long trip in distance and time for just eleven minutes. But it’s worth it. This is where we need to be.
If you’re wondering how I know it was an eleven minute meeting, it’s because my husband started an audio recording when Dr. Trese walked in and stopped it when he left. Why is my husband doing this? Terms. Medical terms and descriptions. Many times we get lots of good information, but we don’t have a frame of reference for it because we aren’t eye specialists. Commonly, after seeing Dr. Trese I have to do research to gain a better understanding of my daughter’s eyes.
Enough of that though, let’s get to the eleven minutes and what was said. It was only an office visit, but Dr. Trese though her right eye retina looked flat. There is some of the PFO in the front of her eye, which we didn’t want to happen, but after he opened up her clouded lens capsule it could more easily happen. Dr. Trese said it’s no reason for concern, just have her lie on her back and it will move back into the rear of her eye.
He said both eyes looked good size-wise and the left eye looked slightly better as well with a possibility of reduction in retina folds. This could be due to increased pressure in her eye, which his good news as the pressure was at zero in December. The circulation in her right eye, which has been a concern, looked good. Her corneas are clear.
What about the lack of discernible vision in the right eye, though? Dr. Trese said four months is about the minimum for cells to rebuild in the retina. After that they tend to start re-firing again but that’s a process which takes time. We’re still in the formative period at only six months since her initial surgery.
Is the brain in play and ignoring the right eye? He thought it was possible, but not to a significant level because she has bilateral vision issues which makes it unlikely it’s strictly amblyopia/brain related.
Something that’s been improving that’s not directly measurable by improved vision is the pressure in her eyes. The left, untouched, eye has gone from zero pressure to normal pressure. It was thought the ciliary (fluid producing) bodies had been damaged beyond the point of repair. To have the pressure return is excellent news. The right eye appears to have begun to recover as well. If her eyes are able to produce fluids and maintain pressure it changes the amount of intervention and addition of foreign substances needed to keep her eyes functional.
What next? She returns at the beginning of August for an evaluation under anesthesia and likely surgery. He won’t make a decision on what he’s doing until he sees her that day, but if the pressure in both eyes is normal he will remove the PFO as well as the Silicon Oil in her right eye. Those two substances do not permeate out of the eye and have remained since he added them in in December. But by removing both substances the amount of fluid in the eye needs to be rebalanced. To do this he will add Healon into the eye to return pressure to normal. The Healon will naturally permeate out as the eye produces its own fluids.
We’re following up with our pediatric ophthalmologist to discuss patching the right eye going forward. It may still be early, but it’s a good time to think about a plan.
So good news, or hopeful news. That coupled with a complete lack of bad news and I’m having a happy day here.
The Big Boy Update: My son has been wanting to keep pieces of trash as “pets” over the past few days. Is it that he doesn’t want to put the napkin, straw, piece of plastic into the trash or does he want to just keep it? He has three things he’s keeping now. He’s arranged them on his Lego table with the rest of his Legos.
The Tiny Girl Chronicles: FaceTime. I got a call this morning from my husband, but I was confused because it didn’t have the standard picture on the call screen indicating it was him. I answered the call to see his face and realized he’d done a FaceTime call, something I haven’t done in a long, long time. My daughter had wanted to see me. We said hello, she told me about putting coins in the fountain and then I took the phone so my son could say hi too. He kissed the phone three times for his sister and three times for dad.
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