Crankster

Monday, January 21, 2008

In Praise of Hospital Cafeterias

Well, Ella had her latest "procedure" on Friday and came out with flying colors. Unfortunately, the operation--a combination endoscopy and choledochoscopy with a side of general anaesthetic--didn't do jack, but at least she is no worse off than she was before. I intend to write far more about Ella and the delights of modern medicine, but that is for another day. For now, I want to offer some thanks to the wonderful little people, the ones who are there for us in our time of need, yet never get the appreciation they deserve. I'm not talking about the doctors, the nurses, or even the cute lil' candystripers. No, I'm talking about the hospital food service employees.

When I was a kid, it sometimes seemed like we lived at the hospital. Ella was born with a liver defect; for much of her first few years, we were constantly seeing doctors at Bethesda Naval Hospital. In fact, for her first few months, Ella and my mother actually lived at the hospital, in a nice, big room on the seventh floor. It was kind of like a hotel, if you ignored the IVs, the medical waste disposal bags, and the nurses dropping by at all hours. On the bright side, they had custom soap. On the downside, it was iodine-infused and had a nasty reddish-yellow color.

We lived about forty-five minutes away, in Fairfax, but my father would drive my sisters and I out there every evening. At first, we would hang out with the baby, but that would inevitably grow boring, so we started wandering all over the place. We'd bounce on the chairs in the huge atrium area, practice sneaking around the sensors on the automatic door openers, and raid the goodies that the chapel always put out. We came to know all the little hidden spaces in the hospital, got on a first-name basis with the cleaning staff, and made friends with most of the nurses. Best of all, we became huge fans of the cafeteria.

The hospital cafeteria was 1970's fern bar chic, with light-wood tables and dividers, recessed lighting, and hunter green walls. It felt like a sophisticated watering-hole, particularly when my father would hand me a few dollars and send me off to feed my sisters. The food was always frest and delicious. Most of it was prepared in-house, and the staff was generally cheery and glad to help. In fact, it was so good that, even years later, my father was still able to bribe us with a visit there. Many were the times that my sisters and I were convinced to be silent or bear up through a test with the promise that we would go to the cafeteria afterwards.

Another side of the cafeteria, which I'd forgotten until recently, was the fact that it was incredibly cheap. My parents used to hand me five or ten dollars to feed myself and my sisters, and I always brought back change. Admittedly, this was the early 1980's, and Bethesda was a military hospital, but it still had really good prices. To this day, I still feel like I'm being cheated when I have to pay more than a couple of bucks for lunch. My only excuse is that the hospital cafeteria trained me to be a cheapskate.

Fast forward a few years and I recently found myself hanging out at the Geisinger Clinic in Danville, Pennsylvania, waiting for my sister to come out of her procedure. The waiting room was filled with nervous people waiting for family members, and I felt like, at least in my case, misery doesn't necessarily love company. Having finished my book and the magazine that I packed, I decided to explore the hospital.

From previous visits, I already knew that Geisinger had two restaurants: an extensive, full-service cafeteria on the second floor and a smaller mini-restaurant on the first floor. Ella's friend Wiley, an older gentleman who used to work at the hospital, mentioned a lesser-known cafe on lower level 2, near the children's ward. He told me that it was the most pleasant place to eat, so I decided to put it to the test.

Wiley was absolutely right: the cafe was a sunny little spot with only about five or six tables. The food offerings were minimal, but were perfectly prepared, and the service was fantastic. I got an italian sausage sandwich with fried onions and red peppers, a cup of potato cheddar soup, and a piece of apple pie. Along with a bottle of water, the whole thing ran me about five or six bucks, and the cashier was incredibly cheerful. I found myself a clean table near a sunny window, savored my comfort food, and thought about how nice it is to have a hospital cafeteria when you need one.

I know that many hospitals aren't blessed with this kind of outstanding food service. Roanoke Memorial Hospital, where Georgia was born, didn't have a decent cafeteria, and the food service at Montgomery Regional Hospital consisted of a couple of cruddy candy dispensers. However, the two hospitals in which I've had to spend the most time have both had outstanding, reasonably-priced places to eat. While I don't really look forward to going back to the Geisinger hospital for Ella's next operation, I have to admit that I'm glad the cafeterias will be there.

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Wednesday, December 19, 2007

A Writing Gig

Well, I'm off tomorrow to see Ella. I still haven't packed, need to shower, and want to finish cleaning up the place before I go to bed in 45 minutes or so. In other words, it's business as usual for the night before a trip.

The temp job goes on, but I've moved on to a new part of the filing routine, so it was a little more fun today. I've got a line on a good job that will give me a lot of freedom for writing and whatnot. I hope it will pan out.

In other news, I've gotten a paid writing gig (of sorts). AOL has hired me to write on their youth-oriented finance website, Walletpop. I am the resident go-to guy for bargain hunting and generally living on little to no money. In other words, most of my professional life has been informal training for this job! Please check it out if you get a chance.

I've tried to drop in on your blogs in the last couple of days, but it's been hectic. I will try to catch up when I return on Sunday or Monday.

All the best,

Crankster

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Sunday, December 09, 2007

Everyday Miracle

Well, I'm back from Pennsylvania. When I got to Lewisburg on Friday, I quickly visited Ella at the Geisinger Medical Center, where she was staying. She was pretty energetic, given the fact that she was sporting a tube that entered her upper abdomen, threaded behind her abs, and punctured the left-hand side of her liver. This tube was attached to an equally nifty ostomy bag, which was collecting her bile.

Bile, by the way, is an interesting yellowish-green color. It looks a little like Jagermeister.

By the time I got there, Ella was roughly Lisa Simpson yellow, and the "whites" of her eyes were sort of a canary color. Her bilirubin had dropped from 9.5 to around 7 or so. 1.5 is normal.

Ella was also having a hard time dealing with her body's failure. She was trying very hard to be brave and strong, but this is a lot to deal with at 24. At times, she was unable to sit down, take a shower, or even walk without help. It was incredibly frustrating, and she clearly felt betrayed.

I was having flashbacks to the last time this happened. Ella was about 12 weeks old, and had been diagnosed with Biliary Atresia, a condition in which her connective bile duct was severely blocked. Her bile backed up, causing cirrosis, a deterioration of her liver and duct tissue.

Ella ended up having a Kasai procedure, which was somewhat experimental at the time. In this operation, the surgeon cut away at her liver until he found bile ducts that hadn't been damaged by the blockage and subsequent bile backup. He then brought part of the liver and small intestine outside the body. We used to collect Ella's bile and drain it back into her body. Sometimes we would not do this immediately, and my mother would store the bile in the fridge. Often, my sisters and I almost would almost drink a glass of green stuff, only to realize that it wasn't limeade. We learned to be really careful.

Ultimately, the doctors connected Ella's liver to her intestine. This was intended to be a short-term solution, used to keep her going until she could get a transplant. However, the temporary fix held and Ella thrived.

For 24 years.

When we were kids, our parents often reminded us that Ella's survival was miraculous, that she was "one in a million." Ella had a scar all the way across her belly and a slightly smaller one below it. We would often look at her "cross-stitch" and try to remember the days when she had nearly died. It was difficult, because Ella was anything but frail. Simply put, she got into the same trouble as any other kid, and passed her medical checkups with flying colors. She thrived through her childhood, the death of our parents, high school, and college. She double majored in Sculpture and Painting and Printmaking, earning a Summa Cum Laude in both majors. She went on to a graduate assistantship at Bucknell, where she's been for the last year.

As it turned out, Ella wasn't one in a million. She was more like one in six billion. Simply speaking, kids with Kasai procedures usually need transplants within a couple of years. Kasai livers just don't last into the twenties.

We forgot about this, only to be reminded last week. The left side of Ella's liver is currently blocked. The tube is draining out the bile, but she's going to need a permanent solution. The next step is to explore the bile duct on the left side of her liver in search of the blockage. If that doesn't work, Ella will probably need a "Kasai revision," which involves clearing out her bile ducts directly and reattaching them to her small intestine.

At this point, everything is somewhat experimental. Revisions aren't generally done on 24-year old Kasais, as 24-year Kasais don't generally exist. Further, bile duct explorations aren't usually done on scarred, 24-year old cirrhotic bile ducts, as these are also incredibly rare. Whatever happens next, it will be somewhat revolutionary.

The Gastroenterologist is trying to determine the chances that the exploration will be successful. If it looks good, we'll pursue it after the holidays. If not, we'll start looking into the Kasai revision.

Ella's spirits are high, although the pain creeps up on her, especially since she's trying to avoid hitting the Percoset too hard. Laughter can be particularly tough, as it irritates her abdominal muscles. Ysterday, after we got her home, she tried to keep the pain at bay with some over-the-counter meds. It didn't work too well, and she got pretty ticked at me for making her laugh. I offered to discuss the Holocaust with her, but she gave me a steely glare.

By the time I left this morning, she'd gotten her pain management under control. I'm counting the days before she starts to chafe at having to lie on a couch. I give her about half a week. The doctors have told her that she can do pretty much whatever her body will handle, but that she should be careful to avoid overdoing it.

I think that "overdoing it" might have been printed under Ella's picture in her high school yearbook. To put it mildly, the kid tends to live on the edge. However, with her sisters and I all hovering nearby, I think she'll try to keep it under control. Besides, it's only a couple of weeks before she'll be up here for Christmas. How much trouble could she get into in a couple of weeks?

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Friday, December 07, 2007

Recent News

So, it's almost one in the morning and I have to get on the subway at 6 to catch a 7:30 bus to Lewisburg, Pennsylvania.

And I can't sleep.

My youngest sister Ella, the one I raised, is in the hospital. She had some liver problems when she was a baby. They were very, very serious, and we were amazed that she survived. Yet, survive she did, and she has thrived for 24 years now.

A few days ago, she woke severely jaundiced. She ran to the local hospital, which subsequently transferred her to a larger, regional medical center about 40 miles further away. Apparently, one of her liver ducts was blocked, which was causing bile to back up inside her. Right now, they're not sure if it was caused by scar tissue, swelling, or a stone, but they've installed a drain, which she will have for about a month. After this, the problem will (hopefully) have gone away. If not, they will operate again.

It doesn't look like this will be life-threatening, but it put a huge scare into all of us. My other two sisters are with her right now, and I will be trading off with them tomorrow. We've contacted all the various relatives, and have gotten back in touch with the doctors who operated on her over twenty years ago. It was a nice reunion, but I can't help wishing that it had occurred under other circumstances.

When she was a little baby, we used to call her "Yella Ella" because of her jaundiced skin and yellow eyes. Even after she healed, the nickname still lingered, and we dragged it out from time to time for shits and giggles. Now, of course, Yella Ella has made a comeback. True to form, we have pulled out the graveyard humor and revitalized the nickname.

It's terrifying, but this whole situation has reminded us about how much we care for each other and how far we are willing to go to help one another out. It's kind of beautiful and terrible and humbling, all at the same time.

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