12 Questions I Wish I’d Asked My Daughter’s Doctors Before Every Outpatient Procedure

notepadNo matter how many times I sent my daughter into an operating or medical procedure space, it was always unnerving. Though eventually I knew what to expect — and so did she — there was always something I forgot to ask. Sometimes, even if I thought I’d heard the answer enough times that I didn’t need to ask it again, a new anesthesiologist or nurse followed a slightly different protocol, and I’d be taken off guard. Because of that, there were questions I wish, in retrospect, that I’d had the presence of mind to ask each and every time.

If you’re taking your child in for outpatient surgery or an invasive test, here are some things you might want to ask – and write down the answers in a notebook you can keep handy. Continue Reading…

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Not Knowing and Knowing Are Tied for Worst

The otolaryngologist (who would prove to always know best, every damn time) warned us about colds for Sammi, but we didn’t know what that meant. As a baby, Ronni had never had a cold. Not ever. We had no idea how a baby with a cold should sound or look. When we left that doctor’s office with a diagnosis, Sammi was 6 weeks old and I was on maternity leave. When I went back to work six weeks later, she still sounded like Darth Vader, but it was her normal.

I went back to work on a Monday, leaving her at day care for the first time. My plan was to work from home two days a week and have our girls home with a sitter one day a week, leaving them in day care just two days per week. I was home Tuesday. They went to daycare Wednesday. The sitter came on Thursday. I came home on Thursday evening and could hear Sammi’s breathing when the door opened, and she was three rooms away.

She hadn’t wanted to take the afternoon bottle I’d left with the sitter. She was breathing louder, and faster, Darth Vader on a treadmill. She smelled like spit-up, though she had not actually spit up anything. After several hours of worrying, our fear overcame my discomfort with asking for help.

I knocked on the door of our neighbor, a nurse practitioner. When she answered, I hung my head and asked, “Can you come over and tell us if we should take Sammi to the ER?”

She showed us how to recognize chest retractions. We went to the ER. It was my first course in Hospital Bag 101.

Now I knew a word I could use, a powerful sword to brandish at triage nurses. It gave me the power, every time I had to take her to the ER, to command a position at the front of the line, a quick path to the oxygen mask and the steroid shot. It got the job done: “I have a three month old baby whose chest is retracting. We need to see a doctor right away.”

nebulizer mask“I have a four month old baby whose chest is retracting.”

“I have a five month old baby whose chest is retracting.”

“I have a one year old baby whose chest is retracting.”

What I didn’t have was the knowledge that a bronchoscopy and a laryngoscopy were two different tests. The question we got in the ER, time after time, was “has she been scoped?” I said yes, but that wasn’t what they meant, and the difference would turn out to be monumentally important.

What I knew made everything scary.

What I didn’t know made everything scary, too.

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Hospital Bag 101

shower headThere is an altogether different quality to the time spent in an evening with a baby whose breathing is compromised. Friends with asthmatic and croup-susceptible children tell me that this slowed-down, stretched chronology is the same for them, with details changed but the timeline largely unshakeable. I remember, as a little girl, waking in the night to find my mother, dressed in pajamas and a terrycloth robe, sitting on the closed toilet lid with my wheezing baby brother, the shower running so hot that a soft rain would fall from the dripping ceiling. He was a croupy toddler. My Sammi was less easily categorized.

Diagnosed with laryngomalacia at 6 weeks old, all we knew was that tissue at the base of her voicebox was floppy. Her gurgling was never cute. It meant fluid was collecting there, in the folds of her loose larynx, and germs would find a happy home in the never-clear, always warm and moist soft tissue just below her throat. During a respiratory infection — others call them “colds” — you could hear this eleven-pound baby breathing from three rooms away.

As a “cold” took hold of my baby, nursing became a fight between air and food. Eat or breathe? At three months, at four months, at five months, at thirteen months, those were her choices.

Dictates of the evening:

9pm: The sound of her breathing would be so loud that we would need to turn up the television if she was in the room.

9:15pm: Nursing her at bedtime, I would watch her chest, right between the ribs, for signs it was sinking in, pulling toward the back. Similarly, I could see the space below her chin, where the neck meets the chest, was doing the same thing. It was like she was breathing in reverse, someone pulling air out of her like a vacuum, making her concave.

9:50pm: Gently, so gently, so slowly and quietly and carefully, I would lay the sleeping, wheezing, whistling baby in her crib.

10:00pm: Hovering on the edge of the chair in front of the computer, I would google “wheezing in baby,” “baby pneumonia,” “what to do when your baby isn’t breathing right.”

10:20pm: Heart sinking, I would pick up the crying baby from her crib and repeat all the steps from 9:15pm, feeling my pulse quicken and starting to make mental lists.

11:00pm: Concerned for the rhythm of her breath, and remembering my mother those many years ago, I would run a hot shower. Hold her on my lap in the bathroom with steam curling around us both, I would wrap a curl of her soft hair around my finger and watch her eyes as they watched me, fluttered closed, and startled open, over and over.

11:30pm: When the indentations in her neck and chest became big enough for shadows, David would hold her while I packed a bag for the ER.

  1. Extra baby pajamas
  2. Bottles
  3. Breast pump
  4. Extra baby blankets
  5. Baby sling
  6. Sweatshirt, sweatpants, socks, t-shirt for me
  7. Bag of granola
  8. Apple
  9. Book
  10. Phone & charger

11:35pm: I would buckle her into her car seat and open all the car windows. Yes, even in December.

11:40-11:50pm: I drove with one hand on the wheel, one hand shaking the carseat, yelling “Sammi?! Sammi sunshine?! You ok?” until she’d cry, proving she was breathing. Repeat. Repeat. Repeat. It was a ten minute drive, or less when I was really scared, and I would pull over more than once to check her breath.

I didn’t offer myself the luxurious option of loving her during any early part of the night. Love is frivolous. Love is weak and emotional. That was why I never hated taking her to the hospital; in the hospital, I could love her. In the hospital, it was always someone else’s job to keep her alive — other people were more qualified than I, other people knew more about sick babies than I did. Once she was in my lap on a bed in the emergency room, nebulizer mask on her face blowing steroids into her lungs, eyes drooping as finding oxygen became less work, only then would I find myself compelled to kiss her on the top of her sweaty head.

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