escalating, back to the hospital

This is probably the worst 32-hour (and counting) stretch we've had. Lars' pain is escalating significantly, and Andey's now given him all the morphine we have. We're not even sure if it's helping. Andey spent some time on the phone with different pharmacies (she knows them all from tracking down hospice meds for patients) to see who stocks liquid morphine in a good concentration, but then it turned out that his primary CCS guy, Dr. Freshface, and his pediatrician, Dr. Richie Cunningham, aren't comfortable with us keeping him home in this amount of pain, giving him morphine & valium that we're not even sure are helping.

That's actually good, because at this point I'm not comfortable with it, either. It's gotten so bad that neither of us can physically hold him through his screaming & arching. Our bodies & spirits are trashed, and he is suffering so. He can't sleep, eat, or drink.

Andey's just left with the boys. She's going to take Joa to school & Lars to his outpatient GI appointment--we weren't about to miss another shot at our first outpatient GI appointment. The inpatient GI docs are so procedure-oriented that they barely look at the boy: just the test results, ma'am.

Andey will then take Lars to be admitted. Freshface & Richie Cunningham think we can get Children's to schedule the brain MRI in the next few days. We're on the list for April, but maybe if we're inpatient they can move it up. Perhaps the outpatient GI NP they see this afternoon will think of something else to do, like a motility work up. Alice's (Lars' amazing PT & cranial sacral therapist since June '04) sense is that it's small intestine-related & she certainly has more information about him over the long-term than any docs.

We also haven't ever tested the depakote-coating-dissolving-early theory by giving the depakote via IV instead of sprinkles. Perhaps this is the time to ask again about that.

I'm going to go teach my class & then go to the hospital. We're hoping to get a hold of a friend who can take Joa overnight, and we're looking for someone who could take Abby the dog in for the night in case this big snow storm materializes & no one can get here to feed her or let her out. If you could do this, please let us know. I should say Abbykyns is not accustomed to cats. She thinks of them as cute, interactive playthings because the cat she lived with for a few days when she was a puppy was unfortunately declawed. It's about time for her to learn her place vis-à-vis cats, so that's not a problem. But if you don't want to enlist your cat as Abby's teacher, that's certainly understandable.

I'm going to spell out my phone number so internet engine crawlers or whatever they're called looking for phone numbers & emails won't recognize it: five zero eight, three nine five, eight seven one two. Email is lisa at kynvi dot com.

Lars was in the hospital for 21 days in January. So February can't actually be that bad because there are only 15 days left of February.

Thanks for reading. As soon as we know where we'll be, I'll try to post it.