Last night was a bit rough- lots of nuzzling, awake for a couple hours. This morning, back to serious screaming.
The last week:
Mon - Thur afternoon = good
Thur eve - Saturday eve = bad
Sun morn - Mon eve = good
Tues morn - ? = bad
Since we came home from the hospital with g-tube, we've had a visiting nurse once weekly to check the site. Friday when she was here, Lars was screaming. So she hooked us up with a home health aide 3 mornings a week, 7-9 a.m. She's here this morning for the first time. I'm thinking BigGrandmaHelpful for a name. Could definitely be helpful. Comes with a big bag of one-size-fits-all tricks. Lars is a different size. At least this morning. BigGrandmaHelpful definitely overwhelmed & somewhat freaked by the intensity of Lars' screaming. Seems to either dissociate a little or holler things like, "come on, baby, calm down, it's a beautiful day, look, look at the sky, come on baby, my poor baby." Just heard Andey tell her, "this is the kind of screaming we were going to the emergency room for, but they can't find anything, so now we're staying home."
Yesterday's appointments: GI was nurse visit to check g-tube 'cause we had to cancel GI appointment last Friday (5" of basement water + screaming, not possible). Nurse Nasty & her sidekick PursedLips. Basically said site looked good. We knew that. I inquired about long-term management of decreased bowel motility & got, "he should drink prune juice." Right.
Neuro was with our new guy, Dr. Okay,Well... He's clearly experienced with this population, knows kids like Lars, was somewhat charmed by him. Spent the hour pulling up Lars' records on the computer & skimming them, coming up with nearly all the ideas others had come up with. Except he's the first chb doc we've had who has clear ideas & opinions about education & school choice. I'll write more about that in the other blog when I have a chance.
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