Tuesday, May 24, 2011

Long Day’s Drip into Remission

The morning coffee barely starts to drip into the pot when I start drugging my daughter.

Two pinks. One white.

ivig gammagard iv bag“Do I need to take my regular medicine, too,” she asks.

“I guess so, Sunshine,” I say. “Bottoms up.”

Among the usual ovals and circles in her daily pill box, there’s now a grainy tablet the color of wet sand.

And now there’s not.

Two liquids: one white that reminds me of chugging red  Hawaiian Punch at childhood birthday parties; one that’s a sickly yellow, oily and best not inhaled.

She washes them down with milk and the last two items in the “SUNDAY” compartment: two vitamins in the guise of Gummi Bears.

“When’s Grandpa gonna bring the donuts?”

“Soon. Grandpa’s an early riser, too.”

The sun finally shows itself and, shortly thereafter, so does the nurse. Soon she’ll start dripping in 50 grams of Intravenous Immune Globulin (IVIG).

Literally, dripping.

For six hours.

Any faster could cause headaches, rash, oh, kidney failure. Nothing big.

“What time did you pre-medicate her with Benadryl and Tylenol?”

“About 7 o’clock or so,” I say. ”An hour ago.”












IVIG is thick, the pancake syrup of intravenous medicines that treat Juvenile Myositis especially when still cold from the refrigerator. It causes tiny pockets of air in the line that frequently set off the pump alarm. When this happens, the nurse opens the pump door, pulls out the tubing and flicks the bubbles loose until they float harmlessly back up into the drip chamber. The tubing goes back into the pump, the door close and a button resets the pump.

This happens every 3 to 15 minutes.

For six hours.

The nurse remains patient. The patient remains calm.

I feel another hair on my head wither and die.

* * *

EPILOGUE: The infusion went perfectly well, including the 90-minute Solu-Medrol drip that followed and me (yes, me) flushing the line and pulling the needle from Thing 1’s arm.

Parenting – it’s not for spectators, people.

A laptop with WiFi, a video from the thoughtful Magpie Musing and several episodes of the second season of “Monk” on Netflix keep Thing 1 well entertained.

I didn’t miss those marathon sessions of Disney Princess Monopoly Jr. we used to play during IVIG infusions for one minute. Or one drip.

And yes, Grandpa arrived with the donuts in the nick of time.

* * *

As always, we welcome your good thoughts and your donations to Cure JM to help all kids with juvenile myositis. Our family is up to $2,750 after only two weeks of fundraising, most of it thanks to readers like you.


  1. She's a very brave girl. Interesting how when you become a parent, you never think that means you'll also become a nurse, psychologist, teacher, magician, etc.,

    All good thoughts headed your direction.

  2. I'm not sure I could do this...you're a strong dude, Kevin!

    Glad she's doing better.

  3. I can not imagine.

    But she looks so strong, and I'm sure you'd sacrifice all the hair on your head to never have to hear the drip drip again.

    Here's to finding a cure, and for Dunkin' Donuts. :)

  4. Amazing kid!

    Sending warm thoughts your way....

  5. What an amazing change since the 5th.

    Don't know how any of you do it. Here's to more good days than bad.

  6. Glad it went well, my man. Sounds about as fun as a trip to the DMV...er, with needles, and such. Yay for entertainment!

  7. Damn, bro, it ain't for spectators, for sure. Glad to hear it was okay.

    This is a good testament to the power of love, yes?

    Power on, dude.

  8. What a strong, shining beauty you've got on your hands there. Hair's a good look for you, so I'll double up all good thoughts that she lets you keep the rest.

  9. What I love about this post, is that it shows how this is not an awful exercise; it's life. I'm not saying that it's a great experience for you, I'm saying that I admire how you've blended therapy into the everyday, and being a happy family, and a normal little girl.
    While it's the focus of your post--it's not the only focus of the things life. She wants donuts, and tv, and like any dad you're sick of cartoon princesses.
    I like the normalcy within what is an obviously taxing situation.

  10. Your girl is a trooper! I hope she goes into remission soon and stays there ever after.

    Parenting has always been a participator sport if you're doing it right. And you are doing it very right.

    Thank God for Grandpa and the donuts!

  11. 7 and a half total hours of this in one day and still grinning? She's something, man.

    If you go completely grey. I'm going to start referring to you as "The Silver Goose."

    Fingers crossed.


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