As I wrote in Part I, we never fully recovered from that awful, severe stomach virus that beset us in Labor Day 2010. As the weather cooled and the girls spent more time in daycare, we all started coming down with colds, and both of the girls started to suffer from chronic, but not severe, childhood illnesses that required near constant doctor visits, night after night of interrupted rest, medication for weeks at a time, with no break, for the next six months.
It was Holly’s first winter (she was born in January, so she spent early 2010 in a cozy cocoon of newbornness) and she caught everything.
And every time she caught a cold, she came down with an ear infection. Ear infections aren’t a crisis, but they do cause a fever (so, no daycare allowed!), terrible sleep (you know we need more help with bad sleep), and general misery for the kid. This happened at least once a month from September to March, each time requiring vats of ibuprofen, at least one (often more) visit to the family doc or urgent care, and rounds and rounds of Amoxicillin.
Amoxicillin is good medicine because it takes care of ear infections. But it’s a 10-day course. This means that for half of every month, she was on antibiotics. If you add it up, she was on abx for 3 months that year. That’s a quarter of the year; indeed a quarter of her life thus far. I used to find medicine syringes everywhere: my purse, my pockets, the bathtub. After the sixth infection in as many months, we got a consult with an ENT who (unsurprisingly) recommended tubes. Two weeks before the scheduled surgery, she got a seventh infection.
I got up at 4 am and didn’t feed her for hours for that surgery (which, other than the denial of food, was a cakewalk. I barely read 3 pages of my book before she was done!). Literally the day after she had the tubes inserted, she started walking and talking. Her ears had been so chronically plugged that her balance and speech were affected. She was 14 months old at the time. I highly recommend myringotomy!
But Holly’s travails pale in contrast to the absolute nightmare from hell that is viral-induced asthma.
VIA is asthma that only happens when you are sick. So it’s not the constant wheeze, it’s not really set off by the usual things that make one think “Asthma!!” It’s actually, in our case, a cough. A niggling, ceaseless cough version of Chinese water torture. She could get around just fine, and rarely had coughing fits that meant she couldn’t breathe. But she couldn’t sleep. She would cough all night. And these coughing problems began when she was only 13 months old.
VIA can be manifest in very young children, even as infants. Yet, despite being relatively well known, we went through round after round of misdiagnosis and mistreatment. We didn’t get Robin’s VIA fully under control until last winter, when she turned 4, and even then it seemed to be a crapshoot as to whether or not the medicine actually helped. From her first VIA “exacerbation” at 13 months to a final, actual diagnosis of asthma from a pediatric pulmonologist at age 3.5, we underwent:
- 3 ER visits
- Numerous late night calls to the nursing hotline, who could/would say nothing other than “bring her to the ER” if none of the conventional treatments for cough (humidifier, etc) were working
- At least 5 nights where we did not sleep at all
- A “clinical”(mis) diagnosis of pneumonia (this means there was no sign of pneumonia but they went ahead and acted as if it was there)
- A (mis)diagnosis of RSV
- A (mis)diagnosis that the coughing was the result of “unusually large tonsils”
- A dozen or more “exacerbations” in which an otherwise mild cold became a coughing nightmare for days on end
- Numerous rounds of oral steroids
- The constant pressure to use an Albuterol inhaler that did not help
Many of these happened during that horrible winter, when the coughing coincided with every otherwise mild cold, and we saw dozens of doctors at family care clinics, urgent care clinics, and ERs to try and help her.
There is no approved cough syrup for children under twelve. Even when we went to the ER, doctors were reluctant to prescribe medication that would help our daughter sleep, even though that was our number one problem related to the VIA. Depending on who we saw, we might get an antibiotic to treat the “underlying cause” with a shrug and wish that things would improve soon. Occasionally, she was prescribed an oral steroid, which did seem to help at times. And every once in awhile, we were given cough syrup with codeine, which became our holy grail because it allowed her to finally actually sleep. But because we were seeing someone new every time, and because they weren’t super familiar with VIA, we never knew if a visit to the doctor would yield actual results. I started to get very angry with medical professionals. I found one doctor who we liked and actually listened to me (and uttered the word “asthma” within a few minutes of meeting us) and basically had him promise that he would see us every time I needed to see someone, because I needed a consistent eye on my kids’ health (same thing with Holly’s ears: sometimes docs were reluctant to prescribe abx because her ears didn’t get terribly red and inflamed: the same doc needed to look at her ears every time so they’d know the lay of the land and make an accurate diagnosis).
Even if we were able to get steroids, the emotional side effects were a nightmare. You know ‘roid rage? Yeah? Imagine that in a high strung toddler. Imagine hours of screaming inconsolably. Imagine your child flying into a rage because you didn’t cut her chicken nuggets just right. Now imagine that happening every single time you interact with her, in any way, all the time, for six months. Often, the treatment seemed to be more of a problem than the illness, but we couldn’t get her to sleep without treating that cough. So we just kept trying and failing and eventually the only thing that “cured” it was for cold and flu season to end so we got a break.
If you’re thinking that spring brought us good health and a break from the madness, you’re right. But first, we were hit with — you guessed it — another severe stomach illness! YAY! And this time, it happened during Spring Break, a week I’d invested enormous hopes in as a time to “catch up” on comps prep and make up for at least some of the lost time. Instead, I spent it taking the constantly-vomiting Holly to the clinic, chasing kids with bowls and buckets, and doing laundry laundry laundry laundry.
For most full-time employees in America, there’s this great thing called FMLA. It guarantees leave for employees caring for chronically sick family members, including children. It also protects you from being fired for “excessive absences” due to caring for chronically ill family members. At my new job, there’s a form to complete every time we are absent with a box that allows us to indicate if the leave is FMLA eligible. You can bet that I would have been filling out dozens of these from Sept 2010-April 2011, and thanking my lucky stars that I couldn’t be fired for missing 40 days of work.
But there’s no FMLA for graduate students. My adviser became increasingly, maybe understandably, irritated with my lack of progress and constant canceling meetings. Instead of more support, I was cut off from my program, my peers, my community, because I was holed up in a house with ill children constantly. Because we were so desperately unhappy in myriad ways at that time, I applied to several full-time faculty positions at community colleges and had some luck with interviews, but I was terrified that I would be unable to attend them. I had no support from my program for this job search and was in fact strongly discouraged from doing anything other than working on comps. At the time, I wrote:
I’m more and more irritated with my adviser and her critical reaction to my potential job in Illinois, and I don’t appreciate her frustration with my kid’s health being an obstacle to our meetings. As if I’m so fucking thrilled to have such obviously unhealthy children, as if I planned for them to get sick at the worst possible times. She never wrote me back after I had to cancel our meeting earlier this week, and now I don’t even want to get in touch with her… At the same time, how WILL I get the damn thing done?? How will I coordinate all the professors and components? Will I be able to do it in the fall? It will be such a tall order. GOD I regret dumb choices I made in the past!! She’s probably right to sort of write me off. I don’t know; I feel like there’s no way forward that won’t involve some tinge of regret, some worries or anxieties that this (whatever “this” ends up being) isn’t the perfect or right thing. I guess that’s being an adult but I tell you what, I hate it.
Ugh. I think I just talked myself into emailing her before I wrap up. BOO. This spring break sucked.
Was there any way for me to get out of this situation? Could I have taken some kind of unpaid leave? I don’t know if we could have afforded to live on my husband’s salary alone. I would have forfeited a contract to teach, and likely lost my foothold in that department. As it was, I accomplished barely anything beyond teaching and keeping my kids alive. I did pretty well in terms of interviews for a faculty gig, but was not offered a job. I nearly quit graduate school that semester, but was receiving a lot of encouragement from the department in which I taught to stick it out because they really wanted to hire me. And I had to have a PhD to teach there. So, despite all the horror and awfulness of the winter, I renewed my commitment to the PhD that spring, decided to do another big push to try and comp in the fall, and worked hard that summer to make progress.