binary girl: the secret blog



no more stitches!

June 20th, 2016

Max has his last (I believe) eye surgery last Wednesday, woo! It was really just an exam under anesthesia as well as removing the rest of his stitches, which is essentially what we’ve been doing these last three times.

As before, we had the first (7:30 — aka obnoxiously early) appointment, so that our ophthalmologist could accompany, and we had the same surgeon go in and take a look at both eyes. The main difference this time was how we pre-medicated; I mentioned that he was slow to wake to the anesthesiologist, who recommended that we forgo the Versed and have me come in for the masking, instead. I gave Max both options and he also wanted that route (although knowing him, I think he was more interested in the part where I said that I would be with him), but having gone through it before, I was prepared for it being somewhat difficult for him to go down… we wheeled him into the surgical suite and he instantly no longer wanted to be laying down, he wanted me to hold him, and he started fighting and being obviously frightened. So, he ended up going down hard — I described the noise that he made as he screamed into the mask being like a tornado siren winding down — and I went back into the waiting room feeling sad (because even if I know that it’s for the best, it’s awful).

I made friends with some of the families who had been there when we arrived as well, talking to a mom of twins with CF who had traveled from Bishop to be there for a procedure for one of her twins (non-CF related, but not only did they have a very genetically rare form, their other daughter had had repeated heart surgeries) as well as a dad who had a son who was born at something like 28w. It was interesting that all of us were “repeat offenders” in the surgery center, so we were all fairly lax and laid-back. Dr. Cooper showed up REALLY quickly and let me know that they could take all the stitches out, and to express again her admiration of Dr. Ta’s work, which felt great. Then, they told me that I was needed back in recovery…

…because Max came up as hard as he went down and they were restraining him as he SCREAMED HIS HEAD OFF. I could actually hear him when I walked in, and I had had no idea that he was having a problem — but I recognized that scream/yell/cry :( He was trying to hit and kick everyone, and pull his patch off and his IV out. I tried to calm him, so he started yelling at me, but we worked through a very difficult recovery from anesthesia to the point that he was able to lay still and rest.

We won’t likely need another surgery, from everything they’ve told me, but we have a follow-up in July to see how his vision is progressing. He IS opening his eye more fully, so while he still will squint that eye shut, he is opening it as much as the other was opened, as well. :D

when good people are your people

May 31st, 2016

My dad’s 74th birthday was this weekend, and that puts me in mind of a story about him.

My parents live on a small island in Marin called Belvedere, which is connected to the cute little S.F. Bay-side town of Tiburon. It’s a 20-min drive away from the freeway (assuming no long lights or heavy traffic) via one two-way street, and not an especially easy place to get to; it’s suburb-y enough that people don’t generally just end up there, they usually go there purposefully — to sight-see or visit family, or because they live there. The streets are very, very narrow, and mostly blind and winding, which somehow doesn’t deter the residents from flying through them as if it’s a speed trial (a behavior I find endlessly amusing because many of them are older than me by a generation and are the same who shake their heads in judgment of anyone lane-splitting on a motorcycle on the freeway). The houses on Belvedere are generally down steep, winding driveways, because many of them are inset into the side of a the island on cliffs that afford them stunning views of both the Golden Gate and Bay bridges, so you rarely see any signs of life on the streets themselves, other than the occasional daytime dog-walker or twilight strolling couple.

Enter: my dad, driving home from work.

My dad is 74. He’s never worked for another person his entire life (well, excepting his own dad), which I jokingly say is “because g-d help the person who tries to tell my dad what to do.” He’s responsible for the leather furniture speciality industry in the US; in college, he founded the first leather furniture business, working in lock-step with designers and manufacturers across the world to bring his vision to life. He’s responsible in great part for my being a software engineer, because as the incredibly technology-focused father of two girls, he and my mom gave us access to all sorts of technology, showing us how to take apart and repair mechanical devices of all types, and getting us a computer at a young age (via points on a credit card, awww yeah Apple IIe). My parents have never subscribed to a prescriptive mindset when it came to our gender, which I’ve learned means a great deal to diversifying this industry.

So, my dad, who still works nearly 7 days a week at 74 years old, is driving home through these crazy, winding streets when he comes across an older woman who is struggling with a variety of bags and paraphernalia in the road. People are driving by her, not stopping. If you don’t live near a major city, your knee-jerk reactions to seeing something like this may differ, but having worked a significant amount of time in San Francisco proper, I’ve seen people become numb to situations like this — there is an expectation that this person either knows what they’re doing and are making it happen (struggling to get home), that “someone else” will take care of it, or that the person is mentally ill or homeless and trying to help them will be of no avail. But my dad? He’s the guy who has worked a deal out with the person who lives in a tent on the property of his current store, instead of calling the cops on him to remove him. First, they became friends — like, real, long-conversations-find-out-your-personal-history type friends. Then, my dad asked him how he could support him, and learned that he liked living off the grid, that he did it by choice. So, my dad “hired” him — he watches the property in the off-hours in exchange for using the facilities, living there, using the electricity to power his computers, etc.

My dad sees this woman and instead of driving by her like so many others, he pulls over.

Dad: “Hi! Are you okay? Can I help you?”
Woman: “I’m just trying to get home…”
Dad: “Can I help and drive you? Where do you live?”

The woman gives an address, but he doesn’t recognize it, so he asks her if it’s on Belvedere, and she says yes, but seems confused. Further conversation and she gives another address, but this one is 24th St. in San Francisco — not nearly close enough to warrant her walking with her things through the windy streets. He asks her if he can help her by driving her down to the police station so they can get her squared away, and she thanks him and gets in the car.

On the way to the station, they have a pleasant conversation, and when they arrive, a police officer comes out to the car and they start chatting through the window open window. The police ask the woman if she’d like to get out of the car and come inside, but she seems reticent, so my dad offers that she can stay in the car and continue to talk if she’d like, which she appears to prefer. The paramedics come to check her to make sure she’s uninjured. She gives the police a number and while they at first don’t get an answer, eventually they connect with a man who indicates that this is his wife and that he’ll be by to get her (he hadn’t answered because he was canvassing the streets for her). The police keep telling my dad that he can leave, and leave her there, but my dad also offers that he can stay until her husband shows up, if she’s comfortable — which apparently she is.

Eventually the husband shows up and they reunite. She’s worried he’ll be angry with her, but the first thing the husband asks if she wants to go for ice cream. “Really? Yes, I would!” The woman has memory issues, and her husband was shocked that she had wandered so far, since she usually stays much closer to her house. He thanks my dad for caring enough to stop and see her home.

That’s my dad. He’s a guy who will stop people who possibly need help, who talks to strangers as if they are merely friends he doesn’t know yet. He’s a good person, and I hope to always strive to be as good. And the funniest part, to me, is that when I said to him that he’s a rare person, he doesn’t see it. He told me that this is just what people do for each other. Which, really, makes it even better!


May 20th, 2016

I was looking at the EOBs that have been generated by Max’s accident today, partially because Brandon and I had been realizing how privileged we are to be able to have essentially immediately been able to send him to the local children’s hospital without even a thought to the expenses we were incurring (due to the fact that we have insurance and a savings account). If we hadn’t been able to get him to LPCH and into the hands of the corneal surgery team there, he would not be in the state he is right now — where we’re expecting that, all things given, he’ll have reasonably correctable vision down the road.

What I saw is that for dates of service that have actually been charged, between the accident on 4/2 and 5/26 (assuming that some have not been received or processed yet), our total out-of-pocket without insurance for Max’s accident would currently be totaling over $152,000. Meaning that Max’s accident, without insurance, would have financially ruined any family that had to endure it, and for a family in our position (with insurance and savings), we will still be fairly affected.

It makes me ill to think about that first moment in the ER, when we would have had to choose between possibly saving his sight and bankruptcy. At the time, we weren’t sure that there would be any saving of his vision in that eye, and I could easily see how we would have trended towards believing that a different, less expensive course of treatment may have been appropriate.

I know that this is not news to anyone, but when you are intimately familiar with it, reading through these EOBs is like a slap in the face to anyone who doesn’t recognize how necessary universal coverage of some sort is. The most outstanding example is that LPCH charged $89,000 just for the room, but our insurance paid $7,000 and marked $75,000 as above what’s termed “reasonable and customary” — so essentially no one needs to ever pay that per agreements and incentives between the hospital and insurance company. This means that a family without insurance would have had to eat that cost and then have it forgiven by bankruptcy — and how is that an acceptable solution?

more stitches gone!

May 12th, 2016

Yesterday we had another exam under anesthesia, with the hope of removing all the stitches. Unfortunately, I had come down with a cold and was completely out of it the day prior (thanks to inconsiderate coworkers who come to work ill), so I was wearing a mask for most of the day. Max was much perkier on his way into the OR, having his head up and watching TV in the waiting room, and watching his iPad in the recovery area. We talked to the nurse about flavoring the Versed so that it was more palatable this time than last, and he actually drank the whole thing (!), so he was pretty out of it on the way to the OR (I, of course, took a video of his little drugged self because it was adorable) and I didn’t have to accompany him. (I won’t lie: I wanted to. I wanted to be there the whole time.)

The procedure was, once again, straight-forward. They took out 4 of the remaining 9 stitches; if he was a sedentary guy they would have removed them all, but since he’s a bouncy 5yo they’re leaving them in for another month. Dr. Fredrick said that essentially, the scar isn’t as “opaque” as he’d like to see in something fully firmed up. However…

Amazing news:
– the retina and back of the eye still looks good. They didn’t mention any irritation like last time.
– the lens still looks clear, so it’s doubtful that he’ll develop cataracts!!!!! This is amazing. He’s been complaining about how his vision is blurry in that eye, so I’ve been asking circumspect questions about the quality of the blurriness to ascertain whether or not it’s related to cataracts forming. I pretty much could not be happier about finding out that the lens still looks clear.
– the work of the original surgeons, Drs. Ta and Tittler, is so excellent that it’s also doubtful he’ll need a corneal transplant. Dr. Cooper drew me a picture of the original injury, which wasn’t just a beveled incision across his eye; it was y-shaped. This means that the first surgery involved stitching the incisions as well as connecting them together with a separate stitch.

So, essentially we’re extremely lucky that we had such a talented surgical team on call that night, because in many ways, that has essentially saved Max’s sight (or reduced the other issues we were facing considerably).

The next steps are: an exam on Monday where we can assess his vision (assuming he’ll let us), patching to force him to start to use the injured eye more in order to keep his brain engaged and functioning, and another surgery in a month, where we will (hopefully) remove the rest of the stitches. At best right now, he’ll wear glasses for the foreseeable future — which is a pretty awesome best!


April 29th, 2016

Max went back to visit Dr. Cooper a few days after his exam and left with glasses! Woo! He got a pair of sports glasses to wear instead of the shield because it’s so much easier to not have to put tape on his face, and it gets him prepared for wearing them full-time going forward. He had been actually opening his eye under the shield as well, so having something that isn’t obstructing his vision in front of that eye would be better than something opaque (although his vision is still impaired there so it’s not like he has great focus, and is closing it probably to make it easier to see).

So, the glasses have no correction in them currently, and the lenses will be replaced by ones which do when we know more about his vision. He’ll have the stitches removed in May and then ~3 weeks later, we’ll measure his prescription and update, and possibly also get “normal” glasses as opposed to the sports frames, depending.

He looks mighty cute.

He went back to school this week every day for a full day other than yesterday (which was Bring Your Kid To Work day at Brandon’s work), and his anger is totally out of control about the whole thing. Hopefully, next week will be easier…


April 22nd, 2016

Dealing with Max’s anxiety is one of the hardest things for me to emotionally cope with. Since he’s cleared to go back to school, we were trying to get him to go to school this morning early (Brandon would be staying there with him) because he said it overwhelms him when all his friends run up to him at once. I explained to him that he if was there first, his friends would show up one-by-one, and then he wouldn’t be crowded.

While the rest of the morning was fabulous, he wouldn’t let us put him in the car. (I did my absolute best jollying and hugging routine but he was not having it.) Brandon finally put him down, and since his eyes were closed, he bumped his arm on the door and totally FELL APART apart for a 10-min hysterical crying jag. I held him and tried to soothe him, and finally let him cry for a while, and then talked him down. At that point, he said he needed a nap so we made him a bed on the floor and I left for work. (As of now I don’t know if they’ve left, but that was 1.5 hours ago.)

I know that it would make me feel better if I saw him just pop back to old routines, because I’d feel like this overall eye thing was not a big deal to him… that somehow I’d done enough to lessen them impact on his little boy brain. Seeing him struggle is making my heart hurt.

exam under anesthesia

April 20th, 2016

Today was Max’s exam under anesthesia, the end result of which was AMAZING. However, getting there was … fraught with awfulness.

We were in the first surgery slot, so we had to be at the hospital (LPCH, same operating rooms as last time) at 6am. I had Max mostly dressed the night before, and everything packed and ready to go, but my anxiety was through the roof so I went to bed after midnight and woke up at 4am. I got myself ready, put everything in the car, then woke Brandon up so he could help me wrangle Max into his seat. He was pretty quiet the whole drive save asking for water once (no go, peanut). We parked and went into the surgery reception, waited a little while with him wrapped up in a blanket the entire time, and eventually got ourselves back into the staging/recovery area.

I got sleepyface all dressed in his pre-op clothing, and then asked the nurse if we could give him some oral Versed beforehand to help his anxiety — which had gone over literally awesomely at the ER when this all first happened. Not so much this time, it was difficult to wrangle him into even trying it and then after doing so, he flat-out refused to touch it again. Three of us had to try to bribe him and then ultimately force him to take it, and his gag reflex hit and he spit a bunch of it all over the both of us, then cried. The nurse and the person from child life were really caring and understanding of his angst, but then the anesthesiologist showed up and wanted to give him more, but he seemed to have gotten enough into his system that he was feeling a little better.

But not better enough that he was *at all* interested in the mask that they use to administer anesthesia! He wanted nothing to do with it; he hadn’t opened his eyes yet all morning and wasn’t about to and he didn’t want to see it or touch it or sniff it or discuss it. We did get him to talk about scents to put in the mask, and he smelled strawberry and watermelon and ultimately he decided on orange, but we also realized that it would be better if I went into the OR with him to help him pass out before they did all the necessary stuff.

So, we changed me into a super awesome OR outfit and I helped to wheel him back. I decided that we would pretend that the masks were SCUBA masks, but he still wasn’t having it, so I was laying very close to him, over him, talking to him and telling him about the sorts of things Brandon and I saw underwater while the anesthesiologist put the gas sort of blowing in the direction of his face. He asked what the funny smell was and one of the nurses brilliantly mentioned that she forgot to wear socks that day, so we all chastised her and then I said, “Hey, let’s smell the orange smell to cover up her foot smell!” He let us put the mask on, and then I motioned to the anesthesiologist to attach the gas, and suddenly Max started screaming. I could tell that it was going to be something he wasn’t going to remember, though, and he passed out REALLY fast afterwards, so they walked me out and I went to the waiting area (after divesting myself of the fanciness).

I barely had time to get myself a soda and something to eat when they were telling me they were wrapping up the surgery. After the 5 hours of awful last time I sat in that waiting room, I was in disbelief — like, this felt really good. (It was also weird being there when other people were there, as opposed to the weekend! Oh! And being less sleep-deprived!) Dr. Cooper came in and looked at me and said, “It could NOT have gone better.” And we hugged. THE NEWS IS SO GOOD!

Good stuff:
– No infection! Woo!
– They removed 3 of the 8 stitches, because they had come loose, and the wound near them was well-healed.
– His pupil is round again!
– His retina looks awesome still!
– We scheduled his follow-up to remove the rest of the stitches!
– He can go back to school!
– His lens appears to still be clear!

Just … stuff (as in — things to keep an eye on):
– There is some scarring across the cornea. This will likely cause an astigmatism at the least.
– His lens was obscured by the scarring and stitches so it could have a small cataract that we won’t be able to see until the stitches are removed.
– There is vascularity across the bottom of his eye developing, most likely from the healing process.
– His optic nerve is inflamed, possibly due to the injury. (We’re treating with steroids.)

I was like, elated. This is really good stuff, yo.

It took Max a long time to wake up and finally I started putting his stuffies all over his head and poking him. :) I brought him home to see my mom and Brandon, and we built the egregiously large Lego set we bought as a reward (which includes both Ant-Man and Giant Man). THIS IS SO GOOD!!!! ALL THE PUNCTUATION!!!!

We’re going to see Dr. Cooper again next week, and like I mentioned, have the stitches removed in May. :)

next steps

April 16th, 2016

We had a second follow-up with Dr. Cooper on Thursday, and another this morning. On Thursday we did see that Max’s sight out of his injured eye is stable (and this was again confirmed today), but otherwise, we did no pushing to see if she could inspect his eye at all — and since he’s not opening it, all she could see were that the whites were inflamed. Since then, however, he’s complained about eye pain, is more light-sensitive (but we’re giving him a drop that dilates his pupils 3x/day so that’s expected), and has been even more reticent to open the injured eye (read: not at all), so today we tried to do a more thorough examination.

It did not go well.

Not only did Dr. Cooper not see anything other than the (still) inflamed white, Max’s resulting outburst was longer than any other he’s had so far. He was hyperventilating, and so distraught that it was clear we couldn’t continue to do anything productively :( In fact, it’s now hours later and he’s back to both-eyes-closed.

So: no school next week (week 3), and on Wednesday we’ll be putting him under general anesthesia so we can see how everything is healing, the state of his lens, another retinal ultrasound, etc. (We can’t send him back to school until we have a good feeling for the integrity of the wound.)


April 11th, 2016

Nicky: it was either a stroke or vertigo. He’s walking and eating! No lie, B and I thought we were driving him to the vet to put him to sleep :( So glad he’s on the mend!

Max: today was his follow-up with our normal pediatric optho. When the doctor first tested his vision, he was able to read nearly every letter off the wall, at all sizes, which was freaking B and I out (in a good way) — but it turns out that he was peeking with his uninjured eye through my fingers! Which of course, made it necessary for me to leave the room and cry, because the roller-coaster was a bit more than I was prepared to deal with.

Ultimately, though, the news was EXCELLENT. We changed his drops regimen because of his light sensitivity, but most importantly: we found that he does have an intact visual system! WOO! He could see enough to identify a birthday cake emoji thing on the largest setting, and the doctor’s fingers, in addition to being able to detect light. Brandon broke down sobbing, he was so happy, and Dr. Cooper threw her arms up in victory and we all hugged a lot.

We still don’t know what’s going on with his lens or his cornea, but damn, this was such an amazing thing to hear. His instructions for this week were to stay home and be a couch potato, so he came home and told Brandon he was ready to be a “lazy tomato”.

My kiddos. <3

in other news, i almost had a heart attack

April 7th, 2016

We got home from the doc appointment to find Nicky lying in a pool of his own urine in the bathtub, unable to stand, surrounded by vomit. When I went to get a blanket he tried to follow me but could barely stand up and his back legs completely repeatedly failed him. His head was tilted, his eyes were all weird, and I was pretty sure that I was about to make an emergency vet clinic trip to put my 15yo first husband to sleep. :(

(He hasn’t really eaten in two days an has twice peed himself in his sleep, but this sudden decline freaked me out.)

The vet thinks he has vestibular disease, though! (Sudden-onset vertigo.) He got a shot and he’s on two anti-nausea meds and I refuse to believe it’s anything else, damnit, because NO. JUST NO. He’s currently wearing a diaper next to me passed out from exhaustion and I’m petting him and … no. I love my fuzzybutt.

post-op visit

April 7th, 2016

We went to visit Dr. T, Dr. Ta, and Dr. Lee today for Max’s post-op. While it was incredibly traumatic for me, Max, and B (after talking to him extensively — and I mean EXTENSIVELY — giving him literally all the power in the world, we ultimately had to sit him in my lap, have me hold his arms and legs, B hold his head, and Dr. T do an exam using an optical speculum… at which point he then beat the crap out of me in anger and yelled and screamed [which I had given him permission to do before we started because I knew this was a violation of kiddo trust]), the amazing news is that his eye is properly inflated, meaning that there is no leakage, that his eye is appropriately white (a little inflamed but nothing alarming), and that his cornea was fairly clear. They could not make any prognosis update based on the visit because he still can’t see Max’s lens but it means that our heavily modified drop application program is working.

Essentially, we have Max do everything: he removes the “turtle shell” (plastic eye protector), lays down, and then we put a drop in, and he doesn’t quite open his eye, but he stretches the eyelid up and the bottom down just enough to try to get some of the drop in. And it’s working, woot!

So, we’re released from surgery, unless we see anything that looks infectiony. My voice cracked when I was thanking them for everything they did for us. Monday we’ll see his normal optho and have a clearer path forward.

And bonus: Max got a lovely care package from his school which included a gift card to GameStop, so we split the cost of Lego Marvel Avengers, and HE OPENED HIS FREAKIN’ GOOD EYE FOR THE FIRST TIME TO PLAY THE GAME AND HE KEPT IT OPEN FOR AN HOUR AND I COULD NOT BE MORE THANKFUL FOR VIDEO GAMES RIGHT NOW HERE’S A PIC!

there’s not even a title for this

April 5th, 2016

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.

the goings-on!

March 26th, 2016

I’ve started updating much less frequently than in the past, mainly because I feel like both kids are old enough that writing about them is a possible intrusion on their privacy. And, I am CONSTANTLY WORKING. So, in ye old tradition, here’s a listicle!

– I am finalizing a proposal for a panel at the Grace Hopper Conference (in Houston again this year, in October), about redefining the technical interview. I am pumped.
– Max is doing incredible with his reading. He literally sounds out everything, and is already well past where Katie was when she entered Kindergarten — probably a side-effect of having an older sibling, but it’s incredible to watch. He writes these adorable journal entries at school that are practically short-stories in length (so much better than his “this is a cat” lazyman entries of a few months ago).
– Katie’s reading is great, too! She’s already a grade level above, and her motivation continues to grow as a side-effect of being able to unlock more and more information. Her math is also astonishingly good. This is all great, because we’re now investigating some pretty serious testing for her, and it relieves me that she won’t be struggling academically on top of everything else going on.
– I am working way too much and I miss seeing my family. But it won’t be like this for always…

the rare public post

January 27th, 2016

Looking back over my recent forays into bloggery, it occurs to me that most of this stuff is locked down (with friends-only copies going to Livejournal, which I can’t believe I still use, although the flow of posts there is ridiculously diminished compared to the days of yore pre-Facebook). So, boom! A public post!

I have, as usual, been concentrating on myself as a parent, and the quality of my interactions with both K and M, as well as B. We’ve made some changes at home (mainly between Brandon and Katie’s interactions) which have had the side-effect of mellowing K out a bit — she’s been better across the board in staggering ways. I can’t decide if part of it is that my commute is so much less intensive (seriously, I went from a ~45 min drive to 10 min, it’s amazing in nearly every way) so I’m present to support B more or what, and I am probably jinxing things in every possible way, but I went from such abject panic about our situation at the beginning of the month to satisfaction that it’s making my head spin.

Here’s a little quizlet from FB I gave the kids over the last two days:

1. What is something I always say to you?
“Sweetie bean, you’re my sweetie bean.”
2. What makes me happy?
I’ve got a good one, “I care if you die!”
3. What makes me sad?
“I don’t care if you die!”
4. How do I make you laugh?
Saying “Maxie is a sweetie bean” and then you tickle me!
5. What was I like as a child?
I don’t know!
6. How old am I?
I don’t know? 20?
7. How tall am I?
30 inches tall.
8. What is my favorite thing to do?
Play video games! I mean, make your children happy!
9. What do I do when you’re not around?
Punch your nipple, that’s what I think!
10. What am I really good at?
You are really good at work!
11. What is something I’m not good at?
Saying “nipple”.
12. What do I do for a job?
Work. You sit at your desk and look at stuff on your computer.
13. What is my favorite food?
Holy Toledos! Tacquitos!
14. What do you enjoy doing with me?
Get Legos!
Answers by: Max; 5

1. What is something I always say to you?
“I love you.”
2. What makes me happy?
Seeing me and Max getting along and brother and sister stuff.
3. What makes me sad?
When me and Max fight.
4. How do I make you laugh?
By tickling us and doing silly jokes.
5. What was I like as a child?
I think you had glasses and dark long hair, clothes, shoes, books, and a school.
6. How old am I?
7. How tall am I?
You never told me this! Thirty inches?
8. What is my favorite thing to do?
Be with your family and do stuff with them and play games with them and tickling them and cuddling with them and loving on them.
9. What do I do when you’re not around?
Go to work.
10. What am I really good at?
Making people happy.
11. What is something I’m not good at?
12. What do I do for a job?
13. What is my favorite food?
Mint chocolate chip.
14. What do you enjoy doing with me?
Cuddling with you.
Answers by: Katie; 7

When I talked to them, I found it weirdly satisfying that they replied in ways that make me think that they think I’m not so bad. I spend so much time teeth-gnashing about whether or not we’re totally messing them up that it’s good to know that in their minds, we’re not totally the worst. :P

new jobbery!

January 3rd, 2016

Starting tomorrow, I will no longer be a BrightRoller/Yahoo; I decided to abdicate the throne and am moving to a small biotech that is in the same city I live in. I’m nervous and excited! WOO!

I am hoping not commuting 45m+ each way every day will leave me more time for ponderings that aren’t just “here’s shit my kids did”. But who knows. :D

In other news, I just turned a year older yesterday, and it began with me taking my littlest to get an emergency root canal. In my defense, though, that’s what he gets for getting to go to Legoland and Universal Studios (oh, and his grandparents’ house) with his sister for two weeks. So ha on him! HA! SILVER TOOTH FOR YOU, BUDDY.


December 14th, 2015

So much going on over here…

Work: I’ve been writing up a post of some of the things I’ve learned about Yahoo as a company over the past year. Having a nuanced view of this company makes me reflect deeply about the Microsoft acquisition of Danger, and how much I missed going on behind the scenes as a side effect of both being an IC, as opposed to a manager, as well as being a part of a non-transparent engineering organization. It certainly makes me feel strongly about how I want to run engineering orgs in the future — where I’ve seen people on my team succeed, and the kind of management style which I deeply believe in (servant leadership).

Pets: For a brief moment, we thought Ash had cancer. Thankfully, he doesn’t, but he does have high cholesterol (normal for his breed) and a problem with bladder stones (also normal for his breed). He’s calmed on the bitey front — although I now muzzle him at the drop of a hat — and since Sadie’s short-lived appearance in our house, he won’t sleep on our bed (partially because he can’t get there without help). Nicky is mostly blind and deaf but totally recovered from the IMHA he suffered from when Max was wee.

Kids: The best. I adore them.

Brandon: My best guy.

this day is fucking awful

November 13th, 2015

super shitty morning parent fail
work awful beyond comparison
killings in paris
college friend has third recurrence of cancer
ash’s blood results come back indicating cancer or carcinoma of some type

more vision blargh

October 20th, 2015

In January I got prism lenses because I was seeing double (yay adult strab). They were 2 prism diopters, but I noticed at the kids’ appointment at August that I’d gone from wearing them when I was tired to needing them all the time, and then still having issues, so I asked the doc if there were exercises I could do to increase the strength of my eye muscles. She was concerned that things had gotten so much worse so quickly, so she asked me to make an appointment with her.

Today I found out that I’ve increased from 2 to 8 prism diopters since January. (Still holding steady at -12.25, though!) The doctor found that my eyes respond to the program that they use to train kids with this issue (usually adult brains have a problem seeing the… square thing that would train you to diverge) so I’m going to start using that, but I also have to have some blood tests to make sure I don’t have a deeper underlying issue, and she prepared me for the fact that I’ll most likely need surgery later on as it becomes harder and harder to correct the problem with prisms (being old means that the combo of needing separate glasses for near+far, my terrible myopia, and strab will become uncorrectable without surgery at some point… and I’m not yet 40, as opposed to being in my 80s, so my eyes have got a lot of crap yet to do).

All my senses are falling apart :/

so big! (inevitable passage of time edition)

August 7th, 2015

Max started pre-k on July 13. Originally, we had wanted him to go to the same school that Katie did for pre-k, but getting into that place is nigh impossible even for people who have been on the wait-list for multiple years (us) and who have priority through work and sibling (us). They give first priority to city employees no matter when they apply, so that, combined with the fact that they’ve pushed back the starting date of kindergarten a month over the past two years, means that there hasn’t been space for him, and we weren’t willing to wait anymore.

The place where we ended up sending him has been amazing so far — he really enjoys being one of the big kids, but not the biggest, and he’s soaking up information like a sponge. Right know he’s smack in the midst of obsession with Jurassic World (the lego version mainly), as well, so everything is about dinosaurs and Jurassic Park and the like. (He and Katie have been playing through the Lego Jurassic World video game and it’s spawned two of his worst tantrums to date, because he loves it so much but also gets SO incredibly frustrated by it.)

He is not a baby anymore, which I am having a weird time coping with — like, I like it, but I also sort of abhor thinking about his age because I feel like he’s still a baby and he’s very nearly 5. That is firmly NOT a baby. When I went to Maine over the 4th of July weekend to visit userinfosilsbycarr (B made me), Brandon took him to get his first not-by-Grammy haircut and they did the sort of cut which made him look like a full-grown young man as opposed to my little beeble. However, he is still my most physically affectionate and cuddly human, and for that, I am hugely grateful.

Katie is almost through the bulk of summer camps! We made the critical error of having her do different camps every week, so on Mondays she’s having some adjustment issues. Happily, we’re almost through them, though, and she has learned so much. She is reading at a fairly good clip, and worked on things like programming, flying a drone, and going to a marine biology camp and coming home with mud from the bottom of the bay painted on her face like she’s a warrior.

She is a lot more focused in her normal activities, as well — she was awarded a patch for perfecting Form #3 (Greenfields) in taekwondo, and is doing well in gymnastics, too. She can kick-turn and do all of the strokes for swimming, and we can take her to a pool without floatation and know that she won’t immediately perish, which is exciting :D I also can depend on her for a lot more at home, including getting herself ready for things in the day without totally getting distracted (especially if I give her a good reason for doing so — dessert, or screen time, or whatever), and she is trending towards being a driver of positivity in her relationship with Max (except when she’s really tired, and then all bets are off).

Yahoo is pretty demanding, but the kids really are my port-in-a-storm. I’m working hard on being patient with them and in general, I am rewarded. I am happy to be a mom to such awesomesauce little folk.

i gave a speech!

July 22nd, 2015

I gave my speech to the whole of Yahoo as part of the weekly all-hands, and it went REALLY well, imo. Not sure how many people were motivated by it, but strangers are still stopping me to tell me how much they enjoyed it.

Then, today, I noticed someone giving a tour to a bunch of kids through our office and I stepped out of the meeting I was about to start with the management team to talk to them briefly and tell them who were are (as former BrightRoll employees). I told them that if they ever wanted to talk to a woman in software engineering that I was always happy to do so, and later that afternoon someone from their program at Stanford emailed me to talk to them — they are part of a program that is a free college prep program for underrepresented students of color. How awesome would it be to be able to positively influence these kids?!

So, plugging along. I’m working more than ever, and trying to change Yahoo for the better. My team continues to be amazing. :D