Wednesday, March 17, 2010

We took out the tube

Last month Max had a persistent cold and post-nasal drip that was really aggravating his reflux. Carolyn and I thought that Max's ng tube was contributing to the problem--after all, how easy can it be to close your esophageal sphincter with a tube running through it? At the same time, the idea of pulling out Max's nose tube had been growing in our minds: we were tapering down his nightly tube feeds with the idea of smoothly going to zero. But with Max sick, we'd backtracked on the plan and increased his feeds. I can't really describe why we pulled out his tube except to say that, for a second, we allowed ourselves to imagine doing so and then couldn't stop. There's a video below (or click here) if you're curious what it looked like (warning: kind of gross)

Removing the tube from Codered Summer on Vimeo.

We waited a month to see whether or not we'd need to reinsert the tube and start pumping again. Yesterday, the medical supply company came to pick up the pump. (Max still seems to have the cold though. Oh well.)

Infinity orange enteral pump
Goodbye, Infinity Orange. I hope the next kid to use you is as lucky as Max.

Over the past month we've also tapered off Max's regimen of medicines. It was much harder to get him to take his medicines when he could actually taste them. With the tube, we could just squirt doses directly into his stomach. Now, we have to sing "The Piña Colada Song" and dance around to convince Max to accept a single dose of medicine. It would be simply impractical to do this for his regular schedule of 19 daily doses---there aren't enough verses in "The Piña Colada Song", for one thing.

We took the tube out the next day

Something's missing from this picture...

When I pick Max up I still make sure not to hold him so his tube is next to my cheek. It's a fresh thrill every time to realize Max no longer has a "tube side".