The Smelly Nose Thing

My daughter had no eye surgery today.   That’s not to say we didn’t travel to Detroit and go through everything we would for surgery, it’s just we don’t know until she’s in the OR.  Nor, for that matter, does her doctor.    Some people have eyes that are relatively stable.  Your vision declines as you age, you have a cataract that slowly progresses or you have some specific event like a retinal tear that’s diagnosable.  

My daughter’s eyes are somewhat like going through a haunted house—you know something scary is probably just around the next corner, you just don’t know what it’s going to be.   And then sometimes, just to throw you off, nothing happens, there’s even nice surprise, like the calm before the next unexpected event.    Perhaps that’s not the best metaphor but for almost the last two years it’s what it feels like sometimes.

Today Dr. Trese came in and we discussed how things were going (some vision was back albeit minimal).   My daughter demonstrated how she could, “fix my eye by squeezing it” as she described it, which afforded her some additional visual information.    My daughter was ready to go back to the OR at this point because, “I’m hungry, I want to do the smelly nose thing now”.  By this she meant the anesthesia mask.  Earlier she had been offered multiple scents (rubbing scented chapstick inside the mask) but declined saying she didn’t need it.

In longer than I expected, Dr. Trese came out, which was worrisome but gave me more time to get some Starbucks from downstairs.   My husband and I didn’t expect Dr. Trese to do anything today because her vision was improving some as opposed to declining and with her eyes, less surgeries is on the whole better.    The first thing Dr. Trese said when he walked out was, “her left eye is looking pretty good."

The pressures in both eyes were normal with the left at seventeen, holding from a month ago.   Since we’re uncertain if her eyes produce any internal fluid at all, this is good news in that either the aqueous flow is draining very slowly or the ciliary bodies are producing some measure of fluid, helping to keep her eyes from collapsing.

Her retina in the left eye is also attached.   Yes, I said attached.   And I’m going to be honest here, my husband and I have taken extensive notes every time we’ve talked to my daughter’s doctors and I know they are doing their best to keep us informed—but we’re not eye surgeons or specialists and we don’t always know the right questions to ask.   But this was new.   The amount of detachment we’ve had reported has fluctuated over time, the location and how many folds has been confusing aside from the very scary pictures I posted here way back at the start that made my daughter’s retinas look like crumpled bedsheets inside her eyes.  

At any rate, he says it’s all down and attached, which is quite helpful as she’s never had anything done to the retina on that eye.   She’s had surgeries including having the pressure increased and the lens removed and there are other areas damaged in the eye, but the retina itself hasn’t had the special treatment like the right eye with the Silicon Oil and PFO  added to try and lay the retina down.

Okay, so retina not detached, check.   But there is some pigmentation underneath the retina with a clumping and distribution in the main focal area.   This is likely affecting her vision as a result.   And unlike the hematoma it may not resolve.   That’s not to say it won’t, it’s just not the expected or default course of events.

Dr. Trese suggested we have an EUA in a month to get a refraction.   You heard that right?  I’m finally getting the refraction under anesthesia I’ve wanted for what seems like twelve years now.   Please let’s not have anything go wrong in the next month because getting the correct lenses on her (well, her left eye) might make a significant difference in what she can see.

Dr. Trese left me with that interesting little quaint smile he has, adding a comment almost like he couldn’t help himself.   He said, “she has the nicest spirit.   She came hopping and dancing into the ER and made everyone smile.”

As soon as he’d left, I texted our pediatric ophthalmologist with an update from Dr. Trese.   I asked if we could get on her OR schedule for a refraction and pressure check in a month.   Dr. Grace has been wanting to do some other diagnostic tests as well and they have my daughter in a study which means at no cost and yet lots more data from this new and exciting imaging machine which is FDA approved but since the mounting bar isn’t, they have to do another trial.    How interesting is that?

This post is late tonight and I haven’t responded to text messages today mostly because with no surgery today we decided to come home a day early since we didn’t have a follow-up appointment the tomorrow morning.   Travel was complicated, I almost inadvertantly killed my laptop (it’s okay, I’m nursing it back to help with pliers, don’t ask).   And when I’m done with this post I’m passing out because I was up at 5am and I’m tired.

But yeah, good day overall.   Have we gotten back what we lost from the hematoma?  No.   We’re down vision points (if we’re keeping score).   But we did earn some bonus points for fully attached retina and given my daughter’s eyes, I’ll take what I can get.

The Big Boy Update:  My son is with my in-laws today.   This afternoon Papa suggested they drive their golf cart over to play a few holes.   My son said, “no, no, no, I’m not going to play golf.”   Papa told him, “your father started about the same age as you are and he loves golf.”   My son replied, “just because one person has a talent for something doesn’t mean someone else should have a talent for it.”

The Tiny Girl Chronicles:  Our rental car had radio.  You know, that AM/FM stuff children don’t know about.   We were on our fifteen minute ride to the hospital and my daughter had been stuck listening to FM morning talk show and commercials as I switched from station to station trying to find something.    She said in a disgusted voice from the back seat, “I want a song; this is getting ridiculous.”   I had forgotten how much non-music there is on FM radio.   I had to agree with her.