Saturday, March 26, 2011

04.05.2009 - Empathy

From Julian's COTA journal

Greetings all! It's been a busy month, but a good one! I (David) am here in AZ full time - a huge blessing - we're all moved into the new house here in Gilbert, and Julian is doing well. No complaints. Well, I'm unemployed, so that could stand to change, but other than that, no complaints. I'm happy to be finished with what turned out to be exactly one year of long distance commuting.

I have a whole new level of empathy for my son's current condition, as it relates to his N.G. tube. That's the feeding tube you always see taped to his face and going up his nose. Well, last weekend, when we had to change the tube out (we change nostrils every 4-6 weeks), Julian made it clear that he was none too happy with having to put it back up his nose. Once we were finished, we could tell he was frustrated when he took the stainless steel wire that comes in the tubes (keeps the yellow plastic tube rigid on the way in, then gets pulled once everything is in place) and aimed it at my nose. As near as we could tell, he was communicating "let's see how you like it!" - or something like that. So, I got to see how I'd like it. Julian watched as Stacy installed an N.G. tube on daddy. And that's no faux installation - there's about half a meter of yellow tube threaded through my head, back down my throat and into my stomach. And I can tell you first hand, it's miserable. There's a constant irritation in the nose/sinus, and there's that thing stuck in your throat that you can never quite swallow. How annoying! All things considered, I'd say he's been a remarkably good sport about the whole thing this past year. We hope he doesn't have to keep it much longer.

In other news, we're coming up on one year since Julian's transplant. That means we'll be heading back to Palo Alto next month for his 12 month biopsy. Please pray that this is a productive trip, and that Julian is kept safe and healthy through all of it. The biopsy means he'll be under anesthetic, and although the the procedure is "routine" (Ha! Routine for who?!) there is some risk of infection.

Please check out the Photo Album for a couple new pics of Julian: there a couple of him and his current crush (from a recent trip to Disneyland), as well as one of him in his friend's superhero costume. Good fun.

Thanks for checking in.