cystic fibrosis

The Latest

Last week’s post wasn’t very cheerful. And this one isn’t much better. On Friday, it seemed that Brynn had dodged a hospital admission. And Hadley’s fractured hand only needed a splint.

Well, their luck ran out today.


This morning an orthopedist promptly set Had’s arm in a cast. And few hours later, I shuttled Brynn once again to Hopkins — to address her persistent cough — and the doctors recommended admission.

Brynn  faces 7 to 14 days of hospitalization for IV antibiotics, PT, possible bronchoscopy and other procedures, to be determined.IMG_2092

Hadley will be hindered by her cast for 4-6 weeks, but she was far more distressed about Brynn’s situation. While Brynn waited for a bed to open on the pediatric floor, ER doctors and nurses got to work on her treatment. They hooked antibiotics to her IV line and checked her pulse-ox and vitals. In the meantime, Brynn used my cell phone to update her brother and sister back at home; both dissolved into tears. So there was Brynn, tethered to needles, meds, monitors and constant prodding, and she was the one consoling her siblings. “I miss you too, Hadley. Don’t cry. Please don’t cry. I’ll come home soon. Hey, I have a needle stuck in my arm the whole time… No I’m ok. Is that Cayden crying too? Put him on the phone.”

It’s now midnight and I headed home to gather some clothes and toys for Brynn, snag three hours of sleep and then head back to Hopkins.

For day two.




This Week: The Real Deal


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.


Blisters & Bears


Our crew debated the distance — was it 26 or 28 miles? — but the fact remains: we hiked all day last Saturday.

From long before sunrise (with head lamps) until the dinner hour. We trudged up grassy ski slopes and hoofed across ridges; we slogged through mud, and marveled at spongy, moss-covered forests; we cursed while wading through weedy, abandoned trails.

But we made it.

This was Xtreme Hike 2015, which I previously prattled about here and here. The event raises money for the Cystic Fibrosis Foundation.

Our location for year three? Snowshoe Mountain in West Virginia.

Noteworthy details:

Maisie and I completed the hike at 5 pm… just a shade under 12 hours.


Mile 23 or so


Martin, hobbled by quarter-sized blisters, limped across the finish line a bit later. 

In the predawn hours one hiker encountered a bear, and she temporarily lost her way while fleeing the scene. (I was elsewhere on the trail, but you hear things when you’re carrying a walkie-talkie.)

The rest of us observed bear treads in boggy patches.



We also viewed a kick-ass sunrise behind Shavers Lake.


And later, majestic mountain views.


Kudos to the crew of 45 hikers who ventured out last weekend.

And a great big “thank you” to every one who donated — especially those subjected to my ceaseless nagging for contributions.

You rock.