Friday, December 23, 2011

As a record

"Max has diagnoses that include lipomyelomeningocele, neurogenic bowel, and neurogenic bladder."

Max's bladder pressure spikes to 120 cm (40 cm is an uncomfortable pressure for an adult) when the bladder is filled with only 50 mL of fluid. He has three bladder spasms during the 10-minute test.
"How can you be certain that the test catheter doesn't influence the results?"
"He cannot take a bad test."
"He was so tired. That catheter was a challenge."
"You cannot fool this test."

Seventy-five–minute visit (it is recorded on the chart):
Max will begin using an intermittent catheter, four times a day. Eight a.m., 12 noon, 4 p.m., 8 p.m.

"Oh, look how flexible he is!" 
"He's going to be a hurdler!"
"Look how he sits! Did your other kids do that?"
No, they did not.

And then.
Chart: "Max came to this particular Spina Bifida Clinic due to sudden onset of lower body weakness."

The lower body weakness has resolved. Sometimes "lipo kids" have relapses like this. Sometimes it progresses. Sometimes it does not.

That haunting mass at L5-S1.

Some days I sail along sanguinely: I guide the catheter in and out in only a few minutes; I chat and laugh about it with friends; I make blankets for the children's hospital. His legs look normal, really.

Some days I throw the catheter against the wall. I forget to record the urine volume on the chart. I cry.

Today I detest it. I scrape the mass off the MRI in my mind with a razor blade and dice it into pieces too tiny to be detected.