Then Monday happened.
For those who forgot, or maybe didn't know, on top of Eden's heart issues, she's also got ptosis, a droopy eyelid, on her left eye. She's been seeing a pediatric ophthalmologist since she was 6 months old since it's so low it obstructs the top of her pupil. Put your hand over the top of your eye and look around....that's her whole life. Back in December, her doctor went out of network so we had to find a new one. We saw him in February for a vision check, more than the eye exams we'd been having. Three is about as young as you can check vision.
She did great with her right eye, but was very uncooperative with her left. He managed to get enough of a check done that he estimated her vision at about 20/60. He sent us home with instructions to play "pirate" to get her used to covering her dominant eye for another exam in April. She got pretty good at it and had fun teasing us with how long she could do it.
Monday was that follow up exam. She, again, did great on the right eye but when it came time to check the left, she wasn't really working with us. When the doctor finally came in to do his part, he tested her using a card and said she's not being uncooperative, because she answered just fine when it was her right eye, she just couldn't see. He estimates her current vision in her left eye to be about 20/80. That much deterioration in two months leads him to believe that her brain has started to ignore her left eye.
People with ptosis usually adapt. Think about Forrest Whitaker. He's got it pretty severely and he does fine. I'm not sure if his vision is affected, but it's pretty likely. Eden should have begun to tilt her head back to see better under the eyelid. Her eye seems to be perfectly fine, it's just not being utilized.
So her doctor wants to move her ptosis surgery from summer of 2020 to .... now, essentially.
Not tomorrow, or even next week (thank god for small favors), but sooner rather than later. He sent us home with instructions to patch her for three weeks. We have a follow up appointment with him on May 7.
Because of her heart, this surgery has risks and can't be done in Abilene. She has to go to Dallas to have it done at Children's. So when I got home Monday afternoon, I emailed her cardiologist to fill her in and ask about next steps. She doesn't have an eye surgeon in mind, so our doctor here agreed (and even offered at the appointment) to find one for us. Wednesday we got a call that we have an appointment in Dallas with a pediatric eye plastic surgeon on May 8.
Because I want to do ALL THE THINGS the week after we move. Sounds fantastic.
That's why, if you've seen Eden this week, she's wearing an eye patch. She hates them, but at least she's quit pulling them off. It's a struggle to get them on, but once it's on she generally leaves it alone. Monday was rough, she kept pulling them off, but if we can get her distracted with tv or her tablet, she forgets she's wearing it. I got some pretty ones on Amazon with ladybugs, mermaids, stars, teddy bears, and mouse princesses on them. Amazon seriously has everything, you guys.
I did a little googling of what her surgery will probably be and it looks like it's a 45 minute to 2 hour procedure and we likely won't have to have a stay in the hospital. I'd love if we didn't have to stay overnight at all, but if we do, I'd rather stay in a hotel. Granted, what I read was about a normal pediatric ptosis surgery, not a cardiac patient.
I have every confidence this will go well and she'll regain her vision. We've caught it as early as we could and we're doing what we can. She's my and Austin's child, and no one in our families has good eyes, so it's a given our kids will need glasses at some point. 20/80 isn't terrible (I'm sure mine is worse since I can't even tell if there's a chart on the wall, let alone read any letters) so if it even stalls there, that would be ok with me. That's correctable. We just have to get her brain to use that eye.
And I think it is. She's been watching tv one eyed all week and she's tilting her head back and correctly answering questions the Bubble Guppies and UmiZoomi ask. She gets pretty close to things, but she IS seeing. So that's a relief.
No one likes hearing their child needs surgery, or for that surgery to be complicated. I did cry on Monday, even as I was telling myself it would be fine, that this was nothing, a routine, simple thing for these doctors. The tricky part is the anesthesia, and that's why she's going to Children's. And if anything were to go sideways, she's there at a fantastic hospital that is fully equipped to handle her special case.
But she's still my baby and she's having surgery. Possibly in as little as a month or so.
So, prayers, healing thoughts, etc, all are welcome. She's a fighter and she's strong and willful. She won't let this keep her down.
Her eye is as open as it ever gets. Her first eye patch. She didn't know what was happening so she didn't fight it.
We bought this one but it wouldn't stay in place very well and was constantly slipping over her left eye, so we quit that. It was soft, though, so she prefers it.
Watching tv with a mermaid eye patch. Apparently this is comfortable?