Sam's busy week

We haven't yet received confirmation that either of the donor candidates has scheduled, let alone undergone, the donation procedure, but the transplant team is proceeding as though that is but mere formality. As such, we have been penciled in to return to the hospital for the final, pre-transplant assault on Sam's immune system on Aug. 17, with actual transplant to occur somewhere near Sept. 1.

In the meantime, the hospital is running all kinds of tests on Sam, ostensibly so they'll have baseline data on all his pieces and parts. Today was a busy day. Blood drawn for labs (exact purpose of this particular draw unknown). Then a GFR. Followed by echocardiogram and EKG. And, finally, a CT scan. This coming week they'll do an MRI, as well as the usual chemo treatment and one final spinal tap to test (and, I think, treat with chemo) his spinal fluid.

Sam was in very fine form today--hardly put up a fuss all day long. I thought he'd hate being immobilized for the 20-minute-long GFR, but he was as placid and cooperative as could be.

Alyson, letting nothing at all hang out the CT Scan unit

Alyson and I, on the other hand, were agitated for most of the day by various hospital staff, protocols, etc. We are, for example, continually dismayed at how frequently we are asked questions of a medical nature that, it seems to us, we have little reason to know the complete answers to and that, frankly, should probably not be posed to us in the first place. To wit:

Anesthesiologist before a spinal tap several weeks ago: What kind of PICC does Sam have--single or double lumen?
My unspoken reply: I have no idea what a 'lumen' is or how many Sam's PICC has. Why don't you look at the PICC [five feet away in Sam's thigh]...or Sam's chart...or at the sign on Sam's bed [also five feet away] that in fact describes Sam's PICC"?

Radiology tech before today's GFR: How much blood is Sam allowed to have drawn each day?
My unspoken reply: How the hell should I know? Why don't you ask his doctors, or check his records, or do something similarly instructive so that you don't draw too much, leaving him anemic and in need of a three-hour-long transfusion?

Yesterday's cake takers came on a Radiology unit registration form that asked us to list Sam's medications, the dosages, and their purpose. Alyson and I were indignant.

Sam has spent one-third of his life under very close medical supervision at this hospital for a complex, unusual, and quickly-fatal-if-left-untreated disease. He has undergone dozens of procedures and tests for this condition--again, at this hospital. And he is now preparing for a major, potentially life-threatening procedure...at this hospital. Surely there exists an authoritative resource--at this hospital--where such information could be obtained without further burdening the patient's frightened, bleary-eyed, baby-juggling, and mostly-medically-illiterate parents?

I'm don't think I'm just being a crank. It's demoralizing and anxiety-producing to be asked questions like this by staff about to perform procedures (some of which are inherently risky enough that we're required to sign consent forms before services will be rendered) on our infant son. It makes us wonder if they know who their patient is, know anything about his condition, and are for some reason unwilling to direct their requests for (ostensibly medically necessary?) information to people who might actually know the correct and/or relevant answers.

OK, maybe I am cranky. It was a long day. But still.