The Night Before Christmas, Smith Version

Twas the night before Christmas and all through our home
Were the many trappings of Dravet Syndrome

The tube feeding was hung by the bed with care
It's charming alarm ringing through the night air
The children were nestled, all snug in the bed
One with an electric blanket and a hat on her head

The nebulizer was done, and so was the vest
The time had come for a long winter's rest
The picc line was flushed, the pump batteries changed
The TPN running, the pillows arranged.

And mama in her nightie and dad in his sweats
Were watching Family Feud, that's as good as it gets
When out of the pulse ox there arose such a clatter
Mom ran back to see what was the matter

Away she flew to turn the concentrator on
Put on a cannula, turn off the alarm
The moon shined softly on the bipap machine
The Duoneb, Albuterol, and viles of saline

When what to her wondering eyes came in view
But a big wet diaper without any poo
It was late in the evening, after her bath
And mom was quite happy she did not have to cath.

A cough, a red face, then gagging a lot
Told mom it was time to suction the snot.
And rapidly time to give medicine came
And as she prepared them, she called them by name

Now Onfi, now Topamax, now Felbatol and Nexium,
On Lasix, on Ursodiol, D3 and  Periactin
From the top of the cabinet, while the med sheet she scrawled,
Preparing each one, preparing them all!

As dry heaves are thankfully gone for now
We don't want them back, no way, no how
It's time to sleep so Santa can come
So to soothe the children, mom started to hum

And then a tinkling she heard on the floor
'Cause the feeding tube opened and started to pour
Formula all over everything and then
We started all over and tried it again.

There were visions of sugar plums as they fell asleep
No monitor or machine made even one beep
A silent night made them so delighted
It's Christmas Eve - no paramedics invited!

Mom spoke not a word but sat quietly by
Until it was time to give the bipap a try
She fitted it on so the mask didn't whistle
And the hours flew by like the down of a thistle

She said in a whisper as she turned off the light
“Happy Christmas to All, and to All a Good Night!”