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.

“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.”

“Good.”

Drip.

Drip.

BEEEPBEEEPBEEEPBEEEP

Drip.

BEEEPBEEEPBEEEPBEEEP

Drip.

Drip.

Drip.

Dr-

BEEEPBEEEPBEEEPBEEEP

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.

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