Overnight, Julianna lost her IV and did not sleep. By this morning, she was just about exhausted. I realize now how much I overuse that word. Exhausted…all energy gone, not in the sense that we use it, meaning “I want a nap,” but in the sense that she is out of gas; she physically cannot muster the energy to draw breath anymore.
They put her on the ventilator early this morning, and then called in the doctor to put an IV in her jugular vein. (At least, I think that’s what they said. They weren’t talking to me, and there was this discussion of “internal” versus “external” which I didn’t understand.) So today I have been watching the nurses pull blood out of her neck into a syringe containing saline solution, and then, after doing whatever they’re doing, gently putting it back in.
I got teary-eyed this morning seeing Julianna with a tube taped over her mouth again, but not panicky. Unfortunately (or fortunately, depending on your POV), I’ve been down this road twice before. I just hoped we were done with it, that’s all.
She was exhibiting her usual resistance to sedation. All morning, every time they touched her, her big eyes popped open. It was a little unsettling; the irises looked bigger, somehow. But I think it’s just because they were so lifeless. I’m used to that fire in her eyes, that spark of mischief. Even yesterday, when she was feeling so bad, she could practically speak a language with her eyes. She was pleading with me: Mommy, please make it better. Please. Heart-wrenching.
Well, anyway. They upped all the sedation levels and at last she settled down. Nicholas and I have been sitting in the corner most of the day, but soon we have to go pick up Alex and get home for a while.
Yesterday was a rough day for Alex. The whole day in a nutshell was: clean room, run boring errands, sit in a doctor’s office (morning). Eat lunch, take nap, get rudely awakened and rushed into the car again, to spend two hours in the ER (afternoon). Then home and bed.
Nicholas, however, is the star of the hour. The ICU doctor just took him right out of my arms. “I keep telling my son it’s time for grandchildren,” he said, staring down at Nicholas, who thought his wild pepper and salt beard was the most interesting thing he’s ever seen. And then, “May I take him on rounds?” And out the door he walked!
In the two years since my initiation into the world of the PICU, I have learned a lot. This morning I called my parents to tell them about the ventilator. “They had to intubate,” I told them. It wasn’t till two hours later that the irony struck me: it was just two years ago when I wrote about medical personnel using words like “intubate.”
And I finally understand why the doctors all freak out any time Julianna walks through their door. All this time I’ve thought, rather uncharitably, I confess, that it was an insidious form of bigotry. Turns out that hypotonia (low muscle tone) applies in the throat area as well as in the legs and torso. Her windpipe is “floppy,” and smaller than normal, anyway. So any time she gets basic respiratory distress, it’s far worse than it would be for a child without Down’s.
The house is very quiet without Julianna, and rousing, feeding and dressing two boys is far easier than rousing, feeding and dressing two boys and Julianna. Much more than the loss of one would indicate. Hopefully we’ll all be home again soon.
Kathleen M. Basi 