Monday, June 29, 2009

A visit to the GI clinic

Carolyn took Max the GI clinic at Children's today, where they claimed to have no record of his appointment. It was just a gentle reminder of what a vortex of chaos Children's can be. No harm came of this little mix-up; Carolyn and Max spent an extra hour or so waiting to be seen. They got in a vigorous physical therapy session during the wait, and Carolyn started a feed through Max's ng tube. V., the GI specialist who has been following Max since his days at the HSC, came in just in time to see Max vomit up the first few ccs of his lunch.

The GI clinic weighed and measured Max. He weighs just over 16 pounds; he's gained about 11 grams/day since he left the HSC. This is a little lower than optimal, but it does include a ten day stretch where Max didn't gain any weight at all. Compared against all 8 month old boys, Max is in the second percentile for weight and the third percentile for length; compared against boys born at the beginning of January (his original due date), Max is in the 25th percentile for weight and the 50th for length.

Carolyn had emailed ahead that Children's neurosurgery service had ruled out an immediate shunt to control Max's hydrocephalus. The GI service, like the pulmonary, developmental and other hospital groups that are following Max, had seemed to be waiting for Max to get a shunt before committing to a treatment plan. My fear had been that, when waiting around for the neurosurgeons to place a shunt wasn't an option, the GI team would recommend a Nissen fundoplication. The less said about this surgical procedure the better. However, the GI service has no love for the Nissen.

At any rate, V. seemed pleased with Max's weight gain and overall shape. She pointed to his legs and said "those are great legs! They are not the legs of a malnourished child."

Standing (aided)

(Max obviously isn't standing, but his legs have lots of muscle on them and he enjoys kicking enthusiastically or, as shown in the picture, putting weight on them.)

Indeed, the GI service seemed content to let Max meander along with an ng tube. According to V., most patients tolerate the ng tube fairly well for prolonged periods. V. says that, in the end, it's the parents and caregivers who finally throw up their hands and give up on the ng tube. The kid sneezes it out in the dead of night when four other things are going wrong and the frazzled parents call Children's demanding surgery the next morning.

The surgery Children's have in mind is a simple tube through the abdominal wall. It's a replacement for the ng tube, but not the radical alteration required in a Nissen. These tubes come in different flavors; V. proposed using a PEG tube, which seems quite noninvasive. Carolyn and I have made an appointment to see a GI doctor who specializes in placing these for the end of July.

Max is getting only a fraction of his nutrition by mouth. V predicts that we are "at least months" away from graduating to mouth-only feeding. However, Max hasn't developed an oral aversion and will take fairly significant volumes from a bottle. He also enjoys gnawing on the furniture, a sovereign right of babies dating from our days living in caves:

Biting (or gumming)

(In this picture, Max is shown enthusiastically gumming one of the foam supports of his play pen.)