Family

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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Irish Recap 2016

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As mentioned in my last post, for the 3rd consecutive year, I dashed off to visit my friend, Karen, in Ireland. This time I took all three kids with me.

And guess what? I bought all three home, too.

Today, I’m posting some photos from our trip. (Pixs from previous Irish travels are here and here.)

Three kids meant three dog walkers… which was good, since Karen has 6 dogs.

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Included in the pack are two Greyhounds. On Friday night, we got to watch them race on a track near Cork.

Here they are earlier in the week, exercising at home:

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Valerie won her Friday-night race by 10 lengths.

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And here’s Karen horsing around with one of the lurchers.

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Speaking of horsing around, Brynn attempted to train one of the ponies to be “kid-friendly.” He looked the part:

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But looks can be deceiving.

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For the third year we returned to Inchydoney, a hotel/resort along the south-western coast.

Inchy is a popular destination for Irish vacationers, but it’s not well-known to Americans. So we stood out. And everywhere we went, strangers stopped us to talk American politics. Specifically, about Donald Trump. Sometimes, about Hillary. But always about Trump.

One day in Galway, I fielded Trump questions more than a dozen times. At Inchydoney, Brynn was grilled by a parent in the children’s playroom. On city sidewalks, people would hear our accent in passing, and simply yell out after us: “Hey, hey there! Donald Trump!

It was bizarre.

Here’s Cayden, getting shelled with campaign questions:

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Over 8 days, we logged 1,200 kilometers in our rental car. I’m fairly familiar with the roads but on a few occasions, I found myself hopelessly lost. Why? Two reasons:

1. In small towns, villages and along rural routes, the Irish don’t believe in posting signs that provide street names.

2. And when they do post the rare arrowed signs indicating the direction of a town, locals love rotating these signposts 180 degrees. Just for kicks.

Here’s just one example: Tynagh’s actually the other way.

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Fortunately, the country has a thriving pedestrian population and folks are happy to dole out directions… in Irish fashion: “Where you going? Oh yes, you’re headed the wrong way. Turn around, go up the road a ways. Then turn right. Keep going, and when you pass a stone wall at the bend, turn left, and at the next road, go right. There will be a hump in the road. At the second hump, bear right. Go by a stone cottage and then go some more and you’ll see the road you want. Can’t miss it.

“Thanks,” I’d say. “You’ve been very helpful.”

And then they’d lean in to ask, “You’re American, are ya? What about this Donald Trump?

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At the end of our trip, the big kids declared their intentions to swim in the ocean. Cayden and Had picked a nice windy afternoon — with temperatures around 40 degrees — to don swimsuits. They bolted across the long stretch of sand to the water, where the waves barely splashed their shins before they beat a hasty retreat.

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So there you have it: our vacation slideshow.

Here’s hoping for an Irish four-peat in 2017.

Beastly Boiler

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It’s a cold Monday in January, which means that the heat is out, and I’m huddled by the fire, waiting for Captain Idiot.

Actually, the date is insignificant. And the heating repair guy isn’t an idiot. I’m just sick of being a spectator in this tennis match: the heat goes out, (we schedule a repair, I babysit the house for its service call), then the boiler gets fixed. And then it dies a day later.

I blogged about this two months ago here, when we bought the new boiler. Immediately, we noticed a problem: a clanging cacophony that’s a nuisance during the day, and jarring and impossible to sleep through at night.

 Apparently, the clanging was a warning that failure was imminent. In the last 10 days, we’ve had to summon help last Friday, Monday, Wednesday, Thursday, Saturday and last night.

The latest diagnosis: the auto-fill mechanism on the boiler is faulty and feeds water into the system, flooding the boiler and the pipes. (On one occasion, water spurted from the radiator vents. I discovered the puddles in the morning).

When the boiler is on its course toward overhydration, the clanging occurs as water and steam clash in the pipes.

Why wasn’t this a problem with our old boiler? Because that model had a manual fill — once a week we’d check the water level in a glass chamber, and top off as needed — and drain off the rusty/silty/sludgy liquid in a bucket.

This new heavy-duty, automated beast of a boiler is so powerful, it is forcing more silt and rust from the pipes. In other words, the boiler is not making a love connection with our old house.

Captain Idiot and crew are trying to amend the situation. The Captain just left after replacing the faulty part on the auto-fill. If that doesn’t work, the next step will be to disable the component entirely.

We hope that the boiler and house will find a way to peaceably coexist.

In the meantime, the 24-hour repair service is on speed dial and I’m thankful for our firewood supply, and for the dedicated service of our space heater brigade.

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Most kids crowd around the TV; ours flock to the space heaters.