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".

Friday, March 5, 2010

One year ago

It's been one year since Max graduated from Georgetown's NICU and moved to the HSC. That makes March 5, 2009 one of the four candidates for Max's birthday. The others are his actual birthday, his due date and the day he came home. If we count from the later birthdays, Max doesn't seem as developmentally delayed; indeed, he's downright advanced. More on that in a second.

Looking back on Max's transfer to the HSC, what I remember is the wrenching sense of dislocation as we left behind the nurses, doctors and therapists we'd come to know during Max's 4.5 month stay. We can see now that Max's stay at the HSC was a step on the long journey that brought him home. It's a day to look back at the distance he's come, which is what birthdays are all about.

Nurse K. preps Max for his cross-town journey

Carolyn and I took Max to Children's--right around the corner from HSC--this week to see a developmental specialist (with the Pynchon-esque name of Penny Glass) and to get a routine checkup from the phrenology service. Penny examined Max in a dingy room where the brightest objects were the toys she brought with her. I think the room was designed to minimize distractions. Max did okay on his tests; Penny put his development in the 10 to 12 month range, which would put him right on schedule if we count March 5 as his birthday. The exam itself felt like a play session, with Penny dangling toys, letting him chase balls and so on.

At the hospital
First thing you learn about the hospital: you always gotta wait.

We also had an appointment with the neurosurgery service, notorious for its delays. Max didn't get a CT scan this visit, but we do like to have him seen regularly. His head continues to grow and with his fontanel closing, nature's pressure release valve won't always be available. The neurosurgeons examined Max, measured his head and declared themselves satisfied that Max is on his own growth curve way out at the 99.999th percentile, but at least he isn't jumping to the 99.9999th percentile.

On the couch
Hopefully, hats won't come back into style

During Max's evaluation, Penny remarked that Max's cough sounded as if he had "the croup". I scoffed, insisting that the croup belonged to a bygone era of medicine. However, Max has been sick, so Carolyn took him to the regular peds service. And, of course, he does have the croup. Who knew something so medieval-sounding could still be a problem? And surely I've learned my lesson regarding karmic justice by now? Max is on his second ten-day course of antibiotics for the underlying ear infections and we're applying leeches to control the croup.

With a cold
We just can't seem to keep tissues in the house