Thursday, October 6, 2011

Quite a dude

Small warning: this might actually make you cry a little. :) Yesterday we went down to UVA to see one of the GI docs about the tube site. It had granulation tissue when it was first removed and possibly because of that is not closing up. Dr Barnes wasn't comfortable using the silver nitrate to cauterize the tissue without a surgeon looking at it. Here's why I love UVA so much. Dr Rogers was James's surgeon and he was in the OR. His partner, whose name I can't remember now (terrible of me) was somewhere in the hospital. We have all James's appts in the hospital clinic area. So, ordinarily, UVA's rules are that you need to see the surgeon who performed the surgery unless it's an emergency, which this clearly wasn't. Fortunately everyone knows us and knows how far we drive, plus Eve chose that time to scream her head off while James was crying in terror of white coats (more on this later). Basically, pity and reason won out. One of my favorite surgical nurses got it done. So Dr M (ok, it does start with an M) came in and while we are still not sure if just granulation tissue is the problem, or if his stomach lining is pushing tissue out (sorry if you're squeamish), the doc cauterized the tissue, sent me home with some stuff to continue treatment, and we will give it two weeks. So if everyone could say a couple of prayers that this works, we'd all appreciate it. The surgery is no big deal; it's outpatient; but I just don't want to put James through it again. And me too. :(
It's not unusual, by the way, for horse people to be sent home to treat their own horses with injections and treatments of all sorts. But it's more unusual, for obvious reasons, with children. But parents of kids that have been sick a lot have some sort of weird status with doctors. They seem to accept you as somewhat of a nurse. Which you are, but so often you have to fight through the red tape to get stuff done. Like, I know my kid has this and such, can I just get a script? But instead you go in for a pointless dr appt where they confirm what you know, you get the script you wanted, but you wasted a day of your life. Again, I understand there are lots of stupid people out there, but it's annoying when you're not one of them. I've said so many times how you have to find the right doctors and therapists and not to settle for anyone you don't like. When you find those right people, what ends up happening is that they trust you as much as you trust them. They listen to you and your instincts and you trust their decisions as the best ones for your child, because you work together. It doesn't happen that often, and THAT is why I love this group so much.
I mentioned White Coat Syndrome. I can't believe we have gone so long with James being so amenable to...everything and everyone. Probably because he was asleep for most of his treatments and also because he would truly feel awful or be in pain, and the doctors would actually make him feel notably better in a visit. But now he's scared and it's awful. You'd think when they are older it's a little easier because you can explain things, but the flipside is that they can too. So I have James absolutely hysterically crying and saying things like: I just wanna go home! Why mommy? I feel fine! I wanna get down. Please can I go home.
It was really terrible and there was nothing I could do but distract him by talking about random things, but anytime the door handle shook he would startle and cry again. But we finally get done and he sobs a thank you to the dr, because he's amazing, and we start our long trek back to the car holding hands while pushing Eve in the stroller and lugging our giant bag. It's at least a mile hike but it's a beautiful day so we're just strolling along and about halfway James stops and looks up at me and says, "Mommy? I love you, Mommy." I almost lost it right there. What a kid! He's so brave and good natured and I cannot wait to see the man he becomes!

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