going home early evening

Word has it we're aiming to go home early this evening. Andey's trying to get everything that we need set up.

Andey reports a long, rambling, frustrating conversation this morning with Dr. Uninformative in which he was entirely unable to hear, among other thoughts she clearly articulated, her concerns that Lars basically hasn't been able to move his bowels without a sepository in a couple weeks, and that when he has been able to go, post sepository, he seems not to be clearing his system.

I'm done with Uninformative and Interrupticus; we'll handle the issue with the outpatient GI/CCS team that we now need to build. And next time we come in, Lars' chief attending doctors will be from CCS, the Complex Care Service, not Uninformative and Interrupticus, who are general hospitalists from Harvard Vanguard, assigned to us randomly because Lars' pediatrician happens to be from Southborough Medical and they happen to contract with Harvard Vanguard to provide hospital coverage.

The CCS doctors are specialists in working with kids with complex medical and developmental needs. Hopefully they are doctors who understand deeply that these little people are a system, and that changing any part of the system has implications for every other part, and for the whole. They have promised, among other things, to get us a consistent floor, and room and nurses if they can, for all Lars' hospitalizations so we can build an inpatient team that is informed and consistent.

Perhaps we won't have to explain five times a day, "he's not going to look at the cute toy you brought," and "please tell him you're going to touch him before you do," and "he would like to hear your voice and feel your hands to meet you," and "if you could tape the IV board so he still has use of his fingers, he'll be a much happier kid; he sees with his hands and ears," and "he's non-verbal," and "no, he doesn't point to where the pain is," and "yes, he knows who his mothers are."

I'll head to Longwood Avenue after the IEP & we'll say our good-byes. Even if we end up going back soon-ish, and even though we don't have answers, it'll be good to be home together.