Martin

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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Hodophilia

 

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If “hodophobia” is the is the fear of traveling, then I suffer from “hodophilia” — a strong desire to hit the road.

Really, it’s a disorder and I blame my parents (always good to blame them for everything). They planted the seed, by dragging me on their jaunts through Eastern Bloc countries in 1970s. We’d fly on a dodgy, patched-up plane, owned by a now-defunct charter company, and that thing would cough and sputter across the Atlantic, before depositing us in a Western European city. Then my parents would rent a tin can on wheels, and we’d wade into various Communist countries where vacationing Americans were a rare species.

I took the hook. Now I’m afflicted with traveler’s itch: I believe that passports shouldn’t nest in drawers. They should be cracked open and stamped violently by a passport control officer who barks, “reason for your visit!?”

Which isn’t how they behave in Ireland.

My passport was supposed to ride the pine for a year. But I caved 3 weeks ago and Martin caught me in the act… making a call to an airline customer service agent. I tried to disguise the conversation with airport code — “Yes, I’m calling about EWR to SNN, for 4, departure Feb 19…”

Martin wasn’t amused but he knows my track record. I’ve bolted twice to Ireland in February. It’s just this time, I was sneaky and last-minute. I hastily stocked-up on provisions (this year’s requests from overseas: tuna fish, Heinz relish and bras). And I crammed a couple of suitcases full of clothes, collected the kids’ freshly minted passports and off we went.

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So here we are in Eire, letting me get my travel fix — to smell Ireland, taste it, and see it again. And all the while, I’m planting the seed for the next generation of hodophiles.

They are already on their way.

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Hammer Time

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Back in the old days — like last year — the radiators used to hum and sing.

In the winter months, the thermostat was set to roust the furnace just before sunrise, so the house would be warm in the morning hours. And more often than not, I’d awaken to the chorus of radiators. In fact, the gentle gurgle of steam through pipes served as a snooze button: gently hissing radiator vents spelled an extra hour of sleep before the chirp of an alarm clock.

Unfortunately, when we pronounced the old boiler dead and swapped it with a new model, the radiators changed tune. Classical music was out, heavy metal was in. The reliable and melodic hiss and ping was replaced by a clanging cacophony.

How loud? Imagine sleeping while someone stands over your bed beating a serving spoon against a cauldron. Or a baseball player whacking a pipe with a tire iron. Repeatedly — in a confined space.

The radiators no longer whispered, sleep a bit more. Now they SHOUTED, “HEY EVERYONE, WAKE UP! THE HEAT IS ON!”

Internet research confirmed that noisy radiators are commonplace, but the causes and solutions are poorly defined. The hammering racket may stem from steam working through pockets of water, specifically due to tilted radiators, victim of sloped, settled floors. In such cases the radiators should be leveled with shims. But in other cases, the radiator are intentionally sloped to guide water flow back toward the boiler, and those radiators shouldn’t be leveled. Alternate advice to cease unwanted clanking: bleed the radiators, close the intake valves, open the intake valves, replace the vents, re-insulate the pipe from the boiler, remove steam vents and soak them in vinegar to dissolve calcium deposits…

…lots of handyman, plumber-speak.

I asked Martin what he thought and his diagnosis was vague: “I think it’s excessive pressure building up in the pipes.”

His solution? Accept the noise but alter the timing.

“I can set the thermostat so the furnace kicks in later. Would that help?”

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A source of terrific heat… and noise.