In the past nine days, North’s been to an urgent care once, the ER twice, and admitted to the hospital for two days and three nights. It’s gotten to the point where when discussing some mundane family plans, like when Beth, Noah, and I will finish our currently-in-progress game of Settlers of Catan, we’ll append things like “assuming North’s not in the hospital.”
Before the Hospital: Wednesday
North’s online classes meet Monday, Tuesdays, Thursdays, and Fridays. Wednesday is supposed to be a day to do homework and go to teachers’ office hours. The first week of school, North didn’t have much work, so they used Wednesday to finish the last of their summer homework assignments. We also had a 504 meeting for seizure-related accommodations, with the ninth grade counselor and several of North’s teachers. It went surprisingly well. We tried to get a 504 plan for Noah’s ADHD twice, once in elementary school and once in high school, but were denied both times. We thought this accommodation would be easier to get, but not to have it granted in the meeting. I didn’t even know that could happen.
ER Visit: Wednesday Night to Thursday Morning
I was feeling happy both about that and the summer homework finally being done, so of course on Wednesday evening, things went sideways. Beth was at the grocery store when North told me they needed to pee, but they couldn’t. They’d already tried running the faucet in the bathroom, so I suggested a warm bath. By the time Beth got home, North was very distressed, so we decided they’d go to Children’s. I stayed home because there’s still a one-parent rule in the ER, but Beth and I were texting through the evening. Apparently it was a strange night at Children’s, very crowded in the ER and there was a group of twenty-somethings who seemed to be having a tailgate party, playing music and smoking pot in the garage.
It took a while to get seen because of the crowd, and when they finally were, the doctors wanted to do a bladder ultrasound. If you’ve ever been pregnant, you know that means your bladder needs to be full, so it was 1:30 in the morning before North finally got a catheter to empty their bladder. They didn’t feel as if was completely empty, though, so they went to the bathroom and were able to go on their own. Because of that and because the urine sample and ultrasound didn’t show anything unusual, North wasn’t admitted and they came home.
Back to the Hospital: Thursday Night to Sunday Afternoon
However, the next morning when North woke up they were unable to go again. Beth called our pediatrician for advice. We tried another bath, this one with candles and rose petals (from our rosebush) floating in the water. I was trying to make it as relaxing as possible, but no go. It was dinner time before we got a call back from the pediatrician, who sent us back to the hospital, calling ahead to let them know we were coming and recommending admission.
This time Beth drove us there and dropped me and North off at the ER. One of the intake people recognized North from the night before. (This reminded me of the paramedic who came both times we called 911 this summer. And then sometime during the hospitalization I’m writing about now, one of the neurologists actually remembered North from the complex migraine that paralyzed their hands and feet in fifth grade). What can I say? North is well-known in greater metropolitan Washington area medical circles.
While we were talking to the triage nurse, North seized and all of a sudden all kinds of people rushed in offering oxygen and asking if we had rescue medicine on us, so I had to explain it wasn’t epilepsy so there is no rescue medicine and this wasn’t the problem that brought us here. It wasn’t even a very long seizure, something we’d pretty much shrug off at this point.
Once we got in an exam room, they wanted to do another ultrasound, so again, there was a long wait for the catheter. By this point it had been something like twenty-one hours since North had peed.
Now something I haven’t mentioned yet is that North had been feeling sick to their stomach since Sunday morning after breakfast and it was now Thursday evening. During this whole time they hadn’t eaten except to suck on some candy Sunday afternoon. They were drinking but probably not as much as usual. Still, they were very uncomfortable and as the doctors and nurses discussed whether or not they were dehydrated and needed iv fluids—opinions on this issue were divided—I kept asking everyone who came in the room, over and over, if they could get a catheter. Finally, they did. They also got some anti-nausea medicine and then they were hungry for the first time in days, so I asked a nurse if we could get something to eat. She came back with apple juice and an assortment of crackers. North ate a bag of goldfish and some saltines.
After the ultrasound, two different medical personnel told me North did not have a tumor blocking their urethra—that was something I hadn’t even thought to worry about yet. North got their fourth covid test of the summer, and we got a room. It was one a.m. before we got to bed. Then North was being examined and catheterized again with the lights on from four to five a.m. and a med student came in and woke us up at seven-thirty, so neither of us got much sleep.
Friday was kind of blur, honestly, as I was really tired, but there was a parade of medical personnel who came by, nurses, a physical therapist, an occupational therapist, neurologist(s), urologist(s), etc. Beth came by in the late morning and we overlapped for a couple hours and listened to doctors and played Clue with North. I left for home in the early afternoon. Once home, I put in a load of laundry, slept, and updated my mom on the situation. I’d hoped to work but I was just too wiped out, even with the nap, so Noah and I ordered pizza and watched The Witch.
Back at the hospital, North had an MRI but seized during it, so they didn’t get the images they wanted. The doctors wanted to do a test to see if going an extended period of time without using the catheter would cause North to be able to pee, but it only caused them a lot of pain, so we never repeated the experiment.
I slept nine hours Friday night and stayed at home long enough Saturday to keep doing laundry, menu plan for the next week, make Beth a grocery list, and to work some—with a nifty new two-monitor setup Noah made for me—and I went back to the hospital in the late afternoon. While I was gone, they tried another MRI, with Valium, but it didn’t keep North from seizing. Apparently it’s harder to get slots for the MRIs with an intravenous sedative scheduled because you need a different kind of tech to do it. In their down moments, North tried to watch some of the classes they’d missed Thursday and Friday and do homework.
Beth and I overlapped again for several hours that evening during which we watched an episode of Gilmore Girls with North. Beth needed to stay at the hospital because a nurse was going to show her how to use the catheter. If she could do it successfully that night and the next morning, North could be discharged. She got it on the first try and went home. I spent another night at the hospital with North and then Beth came back in the morning, used the catheter successfully again and North was discharged. We had lunch in the hospital cafeteria– which, strangely, is a treat for North– and went home.
Back Home (Mostly): Sunday Afternoon to Thursday
We were all very glad to be at home together, but frustrated that the new problem had not actually been resolved. North still needs to have the MRI, which is supposed to rule out any spinal compression from their herniated disk, and we need to secure appointments with neurology and urology.
We had most of Sunday and nearly all of Monday at home. North got caught up on schoolwork, Beth grocery shopped, I wrote a batch of postcards to Florida voters and Noah and I made dinner (pasta with basil-mint pesto and fresh mozzarella) on Sunday. Then we went out for frozen yogurt, which we’d meant to do the Sunday prior. Ice cream or frozen yogurt the night before the first day of school is a family tradition, but North had been either sick or in the hospital for a week and we are not people to skip something like that just because it’s a week late.
Monday, Beth made homemade waffles for breakfast because she always does that on three-day weekends and I made a peach-berry cobbler to celebrate the end of the first week of school. Noah and I watched the series finale of The Magicians. Zoë came over for a three-hour porch visit with North and had some of the cobbler with us. We had a backyard picnic for dinner and then went out for Noah’s last-night-of-summer vacation ice cream at Ben and Jerry’s.
On the way home I said something about everyone getting to sleep at home two nights in a row. I should not have said that. North suddenly developed symptoms of a painful UTI shortly after we got home. She and Beth tried an urgent care but they couldn’t handle a catheter, so they had to go back to the ER. It was “uneventful” in North’s words because they were diagnosed with a clear-cut ailment and treated for it. It did keep both Beth and North up late, though. It was two-thirty before they got home.
Meanwhile, in news of the other kid, Tuesday was Noah’s first day of the semester. He only had one class, Audio Production II. On Wednesday he had the remaining three: a computer science class, Ethnomathematics, and Intro to Philosophy. We weren’t able to get much information about his classes out of him. They are all “fine.” They’re all small, roughly twenty-five students each, except for Audio Production, which is about ten. He thinks this audio class might be more hands-on than the one he took last spring, which he would like. He declined to take Cinema Production II this semester because he’d rather have it in person. This makes sense, as the excellent film studios are a big part of what drew him to Ithaca.
North says their favorite class is Japanese because it’s interesting learning such a different language. But they also appreciate that yoga is the only class they are allowed to attend in bed. One day in sculpture class they were assigned to make an assemblage of items that represented their morning. North chose Sunday morning, the day they were discharged, and arranged their mask and some medical debris around their stuffed monkey Muffin, who always goes to the hospital when they do.
Tuesday we also had our first appointment with North’s new psychologist. She seems nice and she does Cognitive Behavioral Therapy, which has been recommended to us for Functional Neurological Disorder by more than one person, so for now, we’re hanging our hopes on it.
Wednesday morning we couldn’t wake North for their first or second class, despite repeated efforts. They slept fourteen hours, from ten p.m. until noon. This was worrying, but when Beth called the pediatrician she thought it could just be fatigue from fighting off the UTI. This would be less of a problem if all of North’s teachers posted video of their classes for students who’ve missed them, as they are supposed to do. But not all of the teachers are doing it and North has been missing a lot of class.
Wednesday at dinner North said high school is hard, but I told them not to judge it based on two weeks full of medical drama. We trust it will get better—we just don’t know when. And in small sign of normalcy, North was able to attend all their classes on Thursday. (Only three out of the four met because their algebra teacher’s house flooded in the torrential rain and he had to cancel class.) It was the first time they’d been to all their classes since Tuesday of the previous week. I’m taking it as a win.