Brynn

Going “Crafty Stitches”

sewing-needle

Now that Brynn has been sprung from the hospital (yesterday, with a picc line… think IV catheter), I can reflect on the week.

Over the years, we’ve developed a lot of family lingo — terminology that means nothing to you, but everything to us. This post is devoted to the newest vernacular:

Going ‘Crafty Stitches.’

Sleep deprivation and stress leads to irrational behavior, as I so aptly displayed last weekend. On Saturday, Martin took the hospital post, while I swapped him for Cayden/Hadley. (This was my first foray into the gen pop. Safe to say, I wasn’t myself.)

The game plan: drop Hadley at her sewing class in Virginia, while Cayden and I cooled our heels at a nearby cafe called “The Bean Bar.”  Then we’d reconvene at the farm and, with my mom, pilgrimage to Hopkins to visit Brynn.

(Sidenote: add “sewing” to Hadley’s resume. At Christmas she acquired a sewing machine and she wants to make her own clothes.)

Sleet was falling when we arrived at Hadley’s final session in a 10-week-long, dress-making course. But the sewing store was shuttered and darkened. I peered in the window and noticed that the equipment — a bank of sewing machines — was gone.

I called Crafty Stitches but the phone number was out of service. Seething, I dragged the kids to The Bean Bar. I ordered them breakfast, cracked open my laptop, and began drafting a message, delivered to every email address associated with Crafty Stitches.

In my own defense, I refrained from using profanity. And I didn’t directly threaten anyone. But the message was venomous and angry. I demanded the immediate(!) return of Hadley’s dress. Perhaps they’d moved locations, I speculated — though I doubted it… my words dripping with sarcasm. There was no sign on the store front and the phone was disconnected.

I assumed they were closed and I didn’t care about their business or the employment status of their staff. With a sick child in the hospital and another one despondent over her sister’s illness, I was FED UP.

I imagined the sewing machines — sold at rock-bottom prices to a competing business — and I pictured Had’s dress and other projects discarded in a dumpster. That really got my hackles up. I wanted the dress that Hadley had so painstakingly sewn and I wanted it, RIGHT NOW. And, I wanted to shove bamboo shoots under the owners’ fingernails.

As I drafted my message, I plotted my next move: if the email bounced back, I’d contact the realty agency. I’d demand contact information and I’d hunt these people down!

Often, you hear about impulsive emails — messages sent, then instantly regretted. I suffered no regret. I reviewed my missive… vetting it for typos… and pondered adding expletives. Then, narrowing my eyes, I hit “send.”

Two minutes later, as the kids tucked into breakfast, my cell phone rang. The caller identified herself as a Crafty Stitches employee. She quickly explained that they’d moved.

“Where?” I demanded.

“Do you know where the Bean Bar is?”

“Yes!” I hollered. “Yes, I know where the Bean Bar is!”

“Well, we’re two doors down.”

“Oh,” I said flatly. “Well, we’re be there… in about 30 seconds.”

As we walked into the bustling store, I apologized for my cloaked threats. (Turns out, the phone was temporarily out.)

“We sent emails blasts,” the employee explained.

“I never got those,” I said.

“We told parents,” the lady added.

“Well, you told my husband… that’s like talking to a piece of plywood,” I said.

“Look,” I added, hoisting my arms and cursing the tears welling in my eyes, “I’m sorry for the nasty email. I’ve got… a lot going on.”

Later, I shared the episode with Martin. He listened, then rolled his eyes and declared, “You’re a mental patient.”

A few days later, when Brynn’s hospital release sounded imminent, Martin mentioned that one test might not occur before discharge.

I bristled.

Martin made the “settle down” motion with his hand. “I already warned the staff that they’d be hearing from you,” he said. “Just go easy. Don’t go all Crafty Stitches, okay?”

I crossed my arms. “What? I’m not going to go all ‘Crafty Stitches’ on them! But she’s in for two more days and already, they can’t do this test? What’s that all about? I mean, WTF? I want those test results before she’s discharged! Is that too much to ask? IS IT?”

So no longer, do I “go postal,” or “Jeffrey Dahmer.” I don’t “chuck a mental,” (credit the Aussies for that one.)

Nope.

If I sense any push-back, I just might go Crafty Stitches on your ass!

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.

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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.

 

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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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