binary girl: the secret blog



there’s not even a title for this

April 5th, 2016 at 23:53

For a couple of weeks, Max has wanted to have a “Superhero Party” with his two best friends, D and C. They’re twins, and he’s been pretty close friends with them since we started at our current pre-k; we’ve even all gone to the beach together. I really, really like them and their parents, so it’s been a friendship I’ve been happy to kindle :) He put a lot into planning the party: he bought each kid special hot wheels cars, he bought superhero napkins and snacks, he made chocolate cupcakes and had Brandon decorate them with Batman signs, he put out a bunch of different games for everyone to play (Pop the Pig, Super Pop Pirate, Uno, etc). He dressed up like Spider-man and they showed up dressed as Batman (D) and Robin (C), and they immediately set out to play. (Katie also invited her best friend L, and her little baby sister, R, and their parents — who are ALSO great people.)

Around 6pm, as Brandon was making dinner, I was sitting there when I heard a scream I have never heard before. I literally didn’t think it came from either of my kids because … I’d never heard anything like it before, it was shrill and filled with fear and just awful. It turns out that C had chucked his car and it had hit Max square in the eye. Max had a cut on the inside of his nose and a bruise on the outside near the eye bone, and he was in an incredible amount of pain; for the next two hours he asked me to put pressure on his eye, needed ice packs, and was sincerely crying intermittently. He still wanted to play with D&C, but he wouldn’t let me not press my hand against his eye. He opened the eye once for me and I barely could see in there, but it looked slightly inflamed (I really couldn’t see but I thought that maybe the inside of his eye was red?), but I finally took him to the hospital at 8pm.

On the way to the ER, all Max could tell me is that he didn’t want eye drops. I told him I didn’t know what was going to happen but I did remind him that the only eye drops we ever give him that hurt actually sting for a minute before they take the pain away, but he was not convinced :( And, of course, the first thing they gave him was … numbing drops that stung and he screamed his little head off. Even with the numbing, he absolutely would not let them look at his eye, so we had to give him Versed, and even then it was a struggle. (Although damn, he was hysterical — he started to play with the melted water in a ziploc back that they’d given him as an icepack like it was the most magical thing ever. Brandon got mad at me for not taking a video so I did later that night, which was even better.)

At 9:40ish, the on-call docs took a look and could tell that there was a laceration but were concerned about his pupil, so they called the ophthalmologist on-call, who arrived at 10:30. They also told us to STOP PRESSING ON THE EYE, which made me feel like an ass (how was I supposed to know, I ask myself?!) because they were worried about the eye integrity. And, they started an IV, which was funny because D&C had just told us about how they’d had an accident in Tahoe and had an IV and hadn’t cried — and Maxie didn’t cry, either! Anyway. The on-call optho? He was weird. He had me stand behind him and told me to look when he was (which of course I was), but then he turns to me and says, “Draw what you saw.” Yes, that’s exactly what the mom of the severely injured kid should be doing, as opposed to waiting for you to tell her what’s going on?!

Here’s my drawing:

You can see that he drew the sutures over my line, but apparently I’m a good artist, and this drawing became useful for every other doctor I saw that night. He could tell right away that Max had an anterior ruptured globe with a ~5mm laceration, meaning that it most likely disrupted his lens (there are only 3-4mm between your cornea and your lens), and he went on to tell me that Max would most likely develop a cataract as a result and needed both the laceration sutured and the lens removed, which would have much further-reaching implications for his vision. The reason his pupil looked weird was that when your eye loses pressure that way, things go towards the rupture, and that distended his pupil. Because this optho was not a pediatric one, he called our normal optho (who he had a working relationship with) to discuss options — he didn’t know she was our doctor, actually, and I only piped up that I knew her when I heard him say her name. She was visiting family in Arizona when the doc called her, and was traveling to Vancouver for a national conference of pediatric ophthalmologists this week, which… was disconcerting, but there wasn’t anything to be done about it.

He went on to tell me that the lens is “like a princess, it needs to be perfect”, or it will develop cataracts which would completely obscure Max’s vision. He also told me that he couldn’t do surgery at Sequoia because he wasn’t pediatric and Max was under 13, and he was sad about it. (Sorry, I guess?) So… his call to our normal doctor was to figure out how to deal with the lens, because the implications of replacing a lens in a 5 year old are very different than with an adult — in fact, you don’t replace the lens. (One doctor of the 4 that we saw since then has said that we might be able to replace it, but most of them said that he’d end up with a contact to focus the light until he’s 18 and can get a lens replacement, like you would for anyone with cataracts). Max needs to have the lens dealt with as soon as it clouds, or his brain will stop using signals from his eye.

We were supposed to transfer to Stanford via ambulance around midnight, so Brandon brought a bag and included a toy of his from his childhood that Max clung on to for the rest of our hospital stays. Max passed out on the cot while we waited, but he did briefly talk to Brandon while our wonderful neighbors hung out at our house with a sleeping Katie. Unfortunately, there was a big accident on 101 closing all the lanes, so I passed out with my face on Max’s legs until the ambulance showed up at 1, and were admitted around 2. (The ambulance folk were extremely kind but I spent most of the ride feeling like I was going to barf on them, thank you so much motion sickness!)

When we walked in (or in Max’s case, wheeled in, in a gurney, looking impossibly small) to Stanford, they walked us directly to a room and immediately handed me a turkey sandwich and a cup of coffee. We went through the fun of more admittance while Maxed dosed, and then we had to administer a second dose of Versed to Max around 4, when their pediatric optho arrived. (Dr. Tittler, aka Dr. T, who was fab.) They didn’t realize that Max had an IV so they gave it to him nasally and the nurse totally LIED to him and it burned (this made me mad, why did they have to lie?) and then she gave him a bear and he calmed down watching one of their hospital relaxation channels featuring pictures of puppies and music. He started hallucinating — first he was looking at his finger lit red by the pulse/ox monitor like he was ET, then he started seeing flying ants and talking to me about them, and I took a video for Brandon. It was brilliant, and it is everything about my sweet little boy that I adore.

Dr. T told me that the wound had happily been self-sealing, but confirmed that he saw what the other doctor had seen with regards to the severity of it. He decided to attempt to book any OR possible between Stanford and LCPH, and told me that they were going to just attempt to fix the laceration, because it would be too difficult to tell what was happening with the lens when looking through such a damaged cornea. He added the fact that we’ll likely need a corneal transplant if the scarring on his cornea was bad enough, and that the range of options at the time were the most minimal an astigmatism because the scar on the cornea would change the smoothness of the eye, to the most extreme, which is that he’d be monocular. We talked very briefly about what that would mean — essentially he couldn’t be a commercial pilot or an astronaut. My poor, Earthbound boy.

He also told me that I was one of the most balanced parents he’d ever dealt with, which was reassuring, I guess!

Our surgery was scheduled at LCPH for 8:30am with a top corneal specialist (Dr. Ta) and Dr. T, so we transferred to our room at 6:50am. The room was super kid friendly and the nurses were amazing, wiping Max down with warmed bath wipes and putting him into the most wee little hospital gown, with a pull out sofa thing right next to it, for me. I couldn’t sleep, really, as different doctors and nurses came in to acquaint themselves with the situation, but they gave me a cup of coffee from the nurses’ station because they are HEROES. Max again passed out soundly, but not before he asked to watch 102 Dalmatians (we had watched 101 downstairs, and he declared that Cruella DeVille was Jaclyn, Katie’s pre-k teacher and our friend).

About 7:50, we wiped Max down with pre-surgical wipes and changed him into a different gown, and then walked him down to the OR, where I met everyone who would be attending. They predicted that the surgery would take 2 hours.

It took 5. (We called back at 3 hours and 5 hours post-start, and both times, they were like, “Oh, it’s almost done.” Reassuring…) I started out by getting something to eat (which was really more like forcing myself), then I hung out in the waiting room, partially because I had no idea where our room was but also because there was not a chance in hell that I was going to be going anywhere. Brandon brought Katie to L’s house and then met me there, at which point I felt free to pass out in a chair in a weird position. Dr. T told us that it took 5 hours because the laceration was beveled and so oddly shaped that every time they added fluid to his eye to check the integrity of the sutures, they leaked. Our normal optho called while we were waiting and asked me to give her cell number to the doctor, and also told me that she called her office to tell them to schedule an appointment with her as soon as she was back. Dr. T confirmed with us that there’s likely lens damage, and pretty much all the things he said earlier, but they did an ultrasound on the eye and found the retina intact… thank goodness. I don’t know that he will be able to ever see out of his eye again, but at least his retina’s good. :(

When he came out from anesthesia he was cute and loving and happy we were there and said it didn’t hurt and that he could see the black spot that C gave him, then he spent the rest of the time in the hospital sleeping and asking me to be in bed with him. I got him to eat jello the first night, and two bowls of rice krispies the next morning (side note: LPCH’s meal ordering service is freaking amazing — you can literally get your kid anything from the menu at any time, and it’s all kid-friendly, with some nice adult options). The docs and nurses told me that he couldn’t get mad (because of the eye pressure), so I was careful to not stress him out, but he was pretty chill so it wasn’t an issue.

He’s out of school for about 2 weeks minimum. We have to give him 2 types of eye drops five times a day, and he hasn’t opened either eye since his surgery, which is making me sad :( He hates the eye drops so much that he screams every time, and since he can’t open his eye at all right now (not sure if it hurts, or if he’s scared, since the doctor who gave him his first exam post-op was frickin’ rough as hell and I’m pretty mad about that), I can’t really do any methods of giving them to him that don’t involve touching his eye. I have talked to him so much about his fear, and he’s tried to make deals with me, but we can’t really afford to NOT give him the meds… and since I have been giving them to him, his anger and fear are directed at me as much as his desire for comfort.

D&C’s mom has set up a dinner train for us. She’s so incredibly upset, which I understand, because she has so little control over this whole accident :( Katie is not handling Max’s attention well so we’re working at giving her some special attention (it’s her spring break), and setting up little playdates for her. She was so funny, the first time I talked to her in the hospital, she immediately demanded pictures of Max “in the hopsital” and was very concerned that he’d be wearing glasses (which he will, since we have to preserve his good eye no matter what).

My heart is so broken right now. I can’t really dive into my feelings because I’m very pragmatic in the face of these things — I am not going to hypothesize about how things will end up — but at the same time, he’s my baby :( I hate everything about this.

2 Responses to “there’s not even a title for this”

  1. Patty Dumond Says:

    Sending love and hugs your way and sorry I don’t follow all the media.
    Breaks my heart and let us know if there is anything we can do

  2. alison Says:

    <3 Thanks, Patty!

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