Leaf Questions

In order to be able to understand something highly complicated, you need to have a basis in knowledge about that thing.   You need to have a foundation on which to base new facts and to ask question to gain new understanding.   When it comes to understanding my daughter’s eyes, I feel like I’m asking questions about the structure of the veins of a leaf when I haven’t the slightest understanding of how that leaf got to be there in the first place.  What is a twig?  What are branches? What role does the trunk play?   Roots?  I didn’t even know there were roots, hiding underneath the ground and performing vital, life-sustaining functions for that little leaf I’ve been asking about.

So, in short, I’ve been asking leaf questions.   I’ve been asking leaf questions without a foundation of knowledge to know if the questions I’m asking are relevant or even appropriate.   And it is through this process of uneducated knowledge that sometimes I report back in this blog things entirely contradictory to other things I wrote about as though they were fact some time before.

It’s okay, I don’t mind.   I can’t expect to have the knowledge of years of schooling and decades of experience with only one case study a few hours each month over the course of a year.   So, bear with me as I report back answers to my leaf questions with the caveat, “Answers Subject to Change”.

Tonight I'm doing a bullet point report on the questions and discussion I had with Dr. Trese today.   If it doesn’t read well, I’ll go back to my more long-winded, paragraph format for next month’s report:

• It was hard for Dr. Trese to look into right eye due to her rolling it back and up through a fierce habit to avoid light which she’s been doing for so long now that it’s hard for her to not keep her eye protected. 
• He saw no infection present in the sclera (white of the eye) and what he could see into her eye looked normal.
• The retinal fold is not as predominant across her field of vision and isn’t that far back into the posterior of the eye (less of the retina) as I had thought—significantly less than 40%. 
• There is no pooling in the bottom of the eye (what he was able to see) which is good. 
• His prevailing theory is something happened to the ciliary bodies in her eyes (summer cold? some sort of infection?) which triggered initial cascade of events in August of 2015.
• At that time, the reduction in aqueous flow (fluid) in her eyes caused hypotony (low intraocular pressure), which caused her retinas to detach, crumple inward and for fluid to subsequently fill in the space behind. 
• Children’s retinas are more flexible than an adults and can stretch. The remaining fold in her right eye may be a result of stretching.
• The iris is two main layers, the color layer on top which is the color we see in eyes and then under later which is mostly a grey. The initial inflammation last August caused her irises to retract and pulled over the under layer, causing scaring, and the ultimate appearance of grey, dilated, misshapen pupils.   As this is scaring in the pupils, this won’t change, although it doesn’t affect her vision.
• At some point during a procedure some blood was likely trapped in her right eye. Blood is food for scar tissue growth.   The tissue Dr. Trese removed from her right eye last Monday was more scar tissue growth and less cellular growth from the remnants of her natural lens.
• The vasculature in her right eye is poor, meaning she has less blood vessels in her retina than a normal person’s. Before we saw Dr. Trese, our doctors at Duke were concerned about the growing aberrant vessels in the eye’s attempt to try and add extra oxygenation to her retina, so they injected Avastin. This caused the “bad” vessels to wither away. 
• Her right eye today is protected by a side-effect of the silicon oil which negates much of the “bad vessel” growing response by the retina. 
• I asked about the left eye and possible future plans. I asked was he considering  a partial vitrectomy in that eye and adding silicon oil and PFO to try and help flatten the retina.  If so, did he think it could be helpful or at this point has it been too long with her current state of vision? 
• Dr. Trese said most of the folding of her left retina has resolved at this point (which isn’t what we remembered, but we may not have asked in a while because there is just a lot going on.) He said the vasculature in the left eye is much better than in the right and that there isn’t an ongoing, current danger now that the inciting incident has passed. 
• We talked about getting a refraction on her eyes during anesthesia.  I shared the challenges (and ultimate failure) of getting a refraction at her ophthalmologist’s  due to the rolling and inability to look at a specific point to get an accurate reading.
• I asked about the PFO (heavy substance) and how that affected the refraction (prescription) when he measured it under anesthesia many months ago. Again, I thought I understood the PFO to be the component that changed the refraction and when she was sitting up and the bubble of PFO was in the bottom of her eye, her refraction index was different. He said the PFO didn’t factor into it at all, it was the silicon oil that was making the change in refraction and that didn’t change with position.  He’s going to try and get an updated prescription for both eyes if possible in January for us and we’ll update her glasses if needed. 
• Next steps: 
• EUA on January 9th to look at progress 
• We’ll look into patching after the January ninth EUA but plan on doing some tests a bit sooner to see if we can, at minimum, help her reduce the eye rolling behavior.
• Continue stingy, unhappy-making antibiotic drops for one more week.
• Continue steroid drops six times per day in the right eye and four times per day in the left.

The Big Boy Update:  My son and husband are building a rocket he got from us for his birthday.  He is very excited about launching it when they’re done.

The Tiny Girl Chronicles:  My daughter asked me on the way to the airport why more people didn’t go to the moon.  I did my best at explaining the rocket my son and husband were building, how it was  hard to escape the earth’s gradational pull (“you fall back down when you jump, right?”) but that people and companies were working on how to get people to space.   I said only a few people had ever been to the moon.    Then she asked me, “yeah, but mom, when I was a baby and was on the moon…how long ago was that?”   She didn’t believe me when I told her she’d never been on the moon, even when she was a baby.