Awful Ophthamologist Visit

We saw the ophthamologist for what I thought would be a routine checkup, just to make sure there weren't any additional issues with his eyes, as the rest have been. We hadn't seen her since November, during the time of all the surgeries, so she had not seen him since the last one when the nystagmus really showed up. Nystagmus is when the eyes move uncontrollably from side to side, which was more apparent after the last surgery, but we were also told the ear infections could contribute to this. And, since we just confirmed on Monday that he had another one, I figured that was what was going on. She was not in agreement with the ear infection theory and was very concerned with how much his eyes were moving. She explained to me that the pressure being in his head for such a long time has probably damaged the nerve that controls this. The really disappointing news was that it is something that cannot be corrected. There is a chance it could improve with time, but if it is truly damaged, there is no medical remedy.

Then she wanted to look at the nerves without dilating the pupils, but he would not cooperate letting her hold open his eyes (he's quite feisty these days). She said, "I'm really sorry, I have to use the speculum." I don't know how many people have really ever watched this placed on someone's eye, but its awful to see. When they did it to Lucas in the NICU, I would always leave the room. I saw a video of a baby having it done one time early on, and that was all I needed to vow to never watch it again. So, I had to hold him lying in my lap while she spread his eye open with this instrument. A nurse helped hold his head, but I had his head in my lap with his feet behind my hip. He screamed and cried so loud it didn't even sound like him. I have NEVER heard him scream so much, it made holding him for an IV seem like a walk in the park. I tried to look away because I knew I couldn't watch him like that. They were taking forever, while he screamed louder and louder with each breath. I finally looked up once, like "what the hell is taking you so long?" and I saw her taking a metal wand and pushing it into the top white part of his eye to try to get his pupil to move back to the center. (When he is under stress or overstimulated, he will push his pupils down to the point you cannot see them...so she was trying to manually bring his pupil back up.) Can you believe that? Imagine for a second that your eyelid is lifted off completely, and then someone is pushing an instrument into the cavity between the top of your eyeball and the bone that surrounds your eye (while you are awake). I was sobbing, just trying to hold on thinking she would be done any second... but he continued to scream louder. I was crying so hard into my arm that I couldn't even catch my breath, I finally told her she just had to stop. She said ok, took the speculum out and turned the lights back on, and I just pulled Lucas to my chest and rocked him as he continued to cry. She then noticed how shaken I was and then she and the nurse worked on consoling me! I know it sounds kind of pathetic that I'm the adult and should be able to handle that kind of situation, but I just couldn't, I can't explain how bad it was. I told her "you don't understand, he never really cries... and what you are doing to him is making an excruciating cry!" She was very apologetic, and even asked to hold Lucas after it was all over. It caught me off guard when she asked because she is one of the "cold" doctors that never shows any signs of softness or compassion. She hugged him and told him she was sorry, and kept telling me what a sweet boy he is. Ehhhh. It honestly took me all day to get over that event, I couldn't get the sound of his cry out of my head.

So, I'm not quite done with the eye appt... she was able to get a look at the nerves in that time and said his optic nerve is showing more damage. We knew that he had optic atrophy from the bleed diagnosed last fall, but now she said it is paler in color, indicating that the pressure has created more irreversable damage (this is a different nerve than the damage causing nystagmus). We don't really know what this means yet, people can see well sometimes with significant optic nerve damage because we don't use all of that nerve, but it is not good because he certainly doesn't need any more things working against him.

And finally... drumroll... she said she could see pressure behind the eye and felt we should get the shunt looked at right away. She thought it may have been malfunctioning again, and sent Dr. Yaun an email to ask her to get us in asap.