Evagation

Tuesday, March 14, 2006

Kid's Day

(Edited to add: Comments now work for anyone/everyone! Thanks to 'Zanny for letting me know that they were kind of messed up.)

Every year, in March, a local newspaper sells copies of it's paper for a dollar and donates all of the money to our local children's hospital.

I began going to that hospital in 1988, when it was still spread out into a dozen random buildings through-out Fresno. My gastroenterologist (that would be the main doc for my disease) was in one building, testing was done in another, surgery in the main facility (except for some out-patient stuff, which was in yet another building) and so on. A trip to the doctor could take the entire day if she sent me to various labs for tests.

The entire, sprawling hospital was, simply, too damn small. I remember being nine, coming out of surgery and puking my guts onto the floor but still having to be hustled out of the hospital because they needed my bed for other post-ops. As the years went by, my family and I would joke that it felt like it I was on an assembly-line with a bunch of other sick kids. The hospital had a definite move-em-in-move-em-out mentality and, of course, the quality of care suffered.

In spite of that, the hospital managed to save my life and the lives of so many other kids that I met while I was there.

The move to the new facility began in 1998 and it is, quite simply, the most incredible hospital that I have ever been to in my life. In fact, they had to kick me out once I turned 22 because, left to my own devices, I would still be going to Children's Hospital.

Which makes me wonder about all of the other kids (now adults), like me. Who grew up in that hospital, moved with it to it's gorgeous new facility, and were shunted out once they reached their twenties. Of course, I understand why we all have been kicked out--I would rather the doctors deal with sick kids than with me but it has still been a terribly difficult transition. I've managed to put off a much-needed colonoscopy (after having this disease for almost two decades, my risk for colon cancer has quadrupled, or something equally heinous and I'm now required to go in for annual endoscopies) because I'm frightened of what the procedure will be like in another facility.

And that's silly but that's my reality. It's impossible to explain how nurturing everyone is at Children's Hospital. Everywhere that I went, from my own doctors, to the labs, to surgery, there was always someone on hand who wanted nothing more than to make the experience a little bit easier for me.

It's disheartening that we have to give up that kind of care as we get older. The few times I've gone to adult hospitals for tests, I've been shocked at how little everyone there seems to care about my peace of mind. If I express fear, they brush it off with a "Well, you've done this sort of thing before, so you should be used to it," apparently not realizing that my fear comes from having done such things before. If I'm uncomfortable, or even in pain, that is also brushed off with a "It'll pass in a moment, just be quiet." I've even had nurses call me names--tell me that I was being a baby, and should act my age.

Such treatment should be, in my mind, inexcusable. When I told my doctors at the Children's Hospital about these experiences, they were the ones who decided to keep me at that facility until the insurance said otherwise. My doctors understood that when you have a chronic illness, and you are going to be spending a majority of the rest of your life in hospitals and doctor offices, that emotional mis-treatment is terrifying. Because I can't console myself by saying "Well, at least I'll never have to see these people again after this is over," because it is never going to be over.

But I'm grateful for all of the wonderful memories that I have from the Children's Hospital. I don't want to imagine how much more harrowing my experience would have been if I had not been surrounded by kindness everywhere that I went.

And I've tried to make my doctors understand, especially when I was finally forced to leave most of them for "adult" doctors (although we, of course, remain in touch and they are always on-hand to offer advice), that it was their kindness that helped save my life just as much as their medical treatment. Without their optimism, I doubt I would be here today with completely in-tact innards and a relatively clean bill of health (for me).

They never, ever gave up on me. Even when I was sobbing in the middle of their office, even when I was screaming obscenities at their nurses because I just wanted out, even when I didn't show up for appointments for a couple of years because I was tired of being sick. Even then. They never gave up. And that gave me the courage to never give up on myself.

Posted by Katie. on Tuesday, March 14, 2006 at 8:15 AM | Permalink | 2 comments | links to this post   

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