This Week: The Real Deal

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Rarely do I write about Brynn’s Cystic Fibrosis. It’s not funny, nor farmy. It hijacks my thoughts every day, by rarely does it claims space on this blog.

But after this week — dominated by doctor appointments and pharmacy runs  — I am writing about it. I’m late on a freelance assignment, there’s a pile of dirty dishes teetering in the sink, and we’ve been eating takeout since Monday.

Let me preface this post with the following: I’m a doom-and-gloom girl. I hitch my wagon to all that’s going wrong. Whereas Martin is unwaveringly positive; he’s rock-solid when I am stressed, depressed and worried. In this blog, I often cast Martin as the clueless, bumbling husband. But he’s far from it. While I struggle to cope, he’s sensible and supportive. He’s the problem solver.

Anyway, Brynn developed a persistent cough — not unusual — and I knew that she needed meds. So I called Johns Hopkins and demanded drugs.  There’s a nurse — who knows Brynn and me. She’s doesn’t grill me with a litany of questions like, “How many times is she is getting Albuterol? How many times is she receiving airway clearance therapy?” I can tell her that I’m doing the standard treatment… blah, blah, blah… and Brynn needs Bactrim. And she calls it in.

But a day later, I realized that Brynn’s cough wasn’t playing by the rules. It was nonstop. Martin woke to “thump” Brynn with her vest and nebulize her at 2 am, 4 am and 5 am.

Clearly, Brynn needed steroids, but those drugs require a doctor visit.

In the pediatrician’s office, I outlined Brynn’s symptoms, their progression, and medications. The doctor asked how I’d gotten the vial of Bactrim. Had Brynn been seen at Hopkins? No, I said. “I called and said that she needed Bactrim.”  Hopkins is an hour and 15 minutes away, and I wasn’t going to take her to the pediatrician’s office — a germ epicenter — for a prescription. “But now she needs steroids,” I explained. “So here we are. You’re going to want to consult the CF team at Hopkins, so here’s their number.”

“You seem stressed,” the pediatrician said.

“Well, I’m a freelance writer, and I have a deadline today,” I said, cradling my laptop on my thighs. Between coughs, Brynn jetted around the exam room on the doctor’s stool, occasionally colliding with the walls. “I’ll be right back,” the pediatrician said.

Hopkins agreed that steroids were needed, but the prescription came with a caveat: if Brynn didn’t improve in three days — by Friday — they wanted to see her. And I knew what that meant: they might admit her for IV administered antibiotics. They tell parents these things to prepare them… so that you’re not caught off-guard. But the information always sounds like a threat: “Hey, you’ve got 3 days to fix things. Otherwise, your kid is ours for a week.”

As we left the pediatrician’s office, the doctor advised us to use lots of antibacterial gel. “We’ve already had five cases of flu this morning.”

Armed with steroids for a couple days, I viewed Brynn as a lab rat: a subject to be monitored and tracked. Does she appear better? Is she coughing less? I queried her teacher: is she coughing more today, less than yesterday or the same?

In the midst of all this — as we basked in unseasonably warm weather — this morning, while Brynn received 30 minutes of airway clearance and nebulized meds — Cayden and Hadley killed time before school by playing soccer. In a struggle for the ball, Hadley fell and rose cradling her left hand. Her ring finger was bent. It didn’t look broken but maybe dislocated? There was minor swelling but Hadley was sweaty and said that she was dizzy, seeing yellow spots. “Shocky?” Martin silently mouthed to me.

I dropped Cayden and coughy-Brynn at school, then shuttled Hadley to Urgent Care. Four hours and three X rays later, a doc reported that Hadley had a broken a bone in her hand. No cast needed, just a splint, but she should see an orthopedist for a precise prognosis next week.

I dropped Hadley at school at 1 pm, just as a mass of students finished recess and shuffled into class. A teacher hooked my arm and murmured that Brynn had been coughing, so much that she’d gone to the nurse to catch her breath. I called Hopkins to book an appointment tomorrow morning at 8 am. Arrive 30 minutes early, the operator advised, with ID and insurance. Did I need the address to the CF clinic? No, I said, curtly, hanging up the phone.

So now it is Thursday night. The article due yesterday is still unfinished. Dishes teeter a bit higher in the sink. Dinner? Pizza again. The good news: Hadley doesn’t have a cast, just a splint. And hopefully, tomorrow morning, Brynn will receive a bevy of meds and a lecture about increasing chest airway clearance. But maybe she’ll avoid admittance.

Martin just came home with a bottle of wine for me. “Don’t worry so much,” he says. “Things will work out.”

With my trademark gloom, I am compelled to dwell on all that’s gone wrong.

But Martin points out, we’re lucky, just the same.

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