Anything for little miss

Have you ever had a sick family member?  I mean, not cold or flu sick, but like really sick, complete with ER visits, hospitalizations, hard-to-pronounce medications, agony-inducing tests or treatments, difficult discussions with doctors about prognosis.  I have experienced it already with both my parents.  It’s been hard, sad, difficult—but thankfully, despite their illnesses, they are managing. They are adults, they've lived their lives, they understand what is going on.  But when it happens to your baby, it’s a completely different story.

The last few weeks have been pure torture.  The dude was sick with a cold, gave it to little miss, and then he promptly fell ill again with a fever, twice.  I think she got both his first and now second cold (and I am just waiting for the next round).  Now I have complained and complained before.  But this time has been much, much worse.

Flashback: A year ago, I was in the hospital with little miss for a week.  The dude had a terrible cold when we came home from the hospital after little miss was born. She promptly got it too.  We were in that unfortunate late Friday afternoon two-week infant “well-visit” with our pediatrician, trying to decide if little miss needed to go to the ER.  When her oxygen level wouldn’t stay up, I hauled ass and got her to the MGH ER.  She was admitted that night.

Her first cold at a tender one-week of age turned into bronchiolitis, a viral infection of the lungs, very common in infants. And so I stayed with little miss in the hospital for the longest week of my life. She was so little, they couldn’t keep the oxygen tubing placed on her nose—so the nurses had to tape them on her tiny baby cheeks.  There was an oxygen monitor taped to her tiny big toe, and they monitored vital signs every four hours, at the most inconvenient times. When she had just fallen asleep, the nurse would rouse her from her slumber to take her temperature—and totally piss her off.   I spent my days and nights holding her, reassuring her, rocking her.

The worst was just being there.  We shared a hospital bed; the RNs fashioned a little nest for her to sleep in. I curled up next to the little bean as she slept, between feedings. Since I was her food source, I got my fill of hospital food.  Sad when picking today’s menu was a highlight: let’s see, will it be MGH’s famous chili or turkey melt? Or when after a few days, I started cycling through the same three menus again. Chili or turkey melt?

There were some high points: my parents and sister came to visit, as did friend A with some fashion magazines.  We had a beautiful view of the Charles River: strikingly blue spring sky and sailboats in the water to remind me that there was still life out there. My husband would come from work every day to visit and eat lunch with us.  I even made it out one afternoon for a few hours to see my sister graduate from medical school. But mostly it was dreary: I sat worrying that she would spike a fever (which would have added the drama of a lumbar puncture and blood cultures); I was numbed to the monotony of the daily routine; I waited for the team to file in and talk about the plan for the day (more of the same, until she got better); I missed my two-year old son and my husband. I just wanted go home and get back to normalcy again. 

And we finally did go home.  But home still wasn't normal.  My son was sick again when we got home, and then everyone got sick with another miserable cold, even little miss, again.  So another month of torture—the sleeplessness of newbornhood combined with a sick one-month old who just wasn’t getting better, a sick toddler and husband, and myself sick.  Someone asked me at the time, emotionally tone-deaf: “Are you having fun yet?” I had to restrain myself from punching them and snapped back, my anger thinly-veiled, “Maybe if we all weren’t so sick. Maybe if I weren’t so tired. Maybe.”

Fast forward: Somehow we all got better later that summer. Since then, there have been plenty of ups and downs of the usual colds. With each one, we have had the discussion with our pediatrician about what her history of bronchiolitis might mean: an increased risk of asthma in the context of a cold. Last Friday little Miss was coughing incessantly all night.  I called around and scrambled together last-minute babysitting for our son (my husband was on call last weekend) and brought her to the urgent care clinic, with the words of my pediatrician in my head (“If she starts coughing, she probably has asthma. We may need to consider albuterol.”). We waited for the longest hour. The covering doctor didn’t get it right: sent us home with the wrong diagnosis, the wrong treatment. Shit. I persisted and went back Monday to talk with our pediatrician. Started albuterol. She also suggested reducing allergens that might also be exacerbating her cough: buying an air purifier, vacuuming the rugs, changing the air conditioner filters, buying a mattress cover.  Did them all.

But still, she was only getting a little better but not great.  No appetite, still coughing, tired. We've been up all night for the last few weeks, tending to her and to her brother.  So my husband and I went back, a little déjà vu: the same late Friday afternoon appointment, same worries—is she going to be ok?  This time, our pediatrician was both reassuring (“she’s not sick,”) but also cautionary (“we’ve got to stop this cough and stop her losing weight.”).  We left with a prescription for the big guns of anti-anflammatory medications for asthma: three-day course of oral steroids.  And started last night.  She’s doing better this morning…now it’s watchful waiting.

The worst?  I can’t explain to her why she doesn’t feel well: why she is coughing through the night, why when she coughs sometimes she throws up, why she has to go to the doctor’s office repeatedly to get poked and prodded. I can’t explain to her why she has to take these icky medicines three times a day.  I am sure they taste horrible. As a parent, you just want to shield your child from this kind of discomfort. I would and will do anything—read: ANYTHING--for little miss not to have to experience any of this.

I am thankful for one thing: when I was at MGH last year, I caught glimpses of what really sick looks like.  I remember seeing that when I was a medical student, and I was reminded of it on my stay in the hospital ward. And though this is bad, I know children and their families who have it much, much worse. Other than this, little miss is a pretty normal, otherwise healthy toddler—and per our pediatrician, she’ll likely grow out of this by the time she gets to school.

Still, it’s times like these when I want to say:  I’ll take ordinary. Not extraordinary. Just give me ordinary.  For a few weeks, maybe even for a few months.  Maybe then we can talk about having fun.