One day Anni was twirling and singing one of her original compositions.
"It's my gift!" she declared.
Dizzy, she fell with spectacular gracelessness.
Laying on her back on the tile floor she began flapping her arms and legs
as if she were making a snow angel.
"Falling down is also a gift!" says she.

Monday, October 31, 2005

Halloween

DSC06214.JPG DSC06217.JPG

Sunday, October 30, 2005

To A Fog Spirit On Halloween
Made up and masked, you stream into the night, your cape floating like gossamer behind you, the moon illuminating what you are and are not: a cool customer, slippery as quicksilver. I cannot fathom you exactly, though I try to. Lately, I've noticed you're all about change, change and silence. And you have properties: you expand and contract, filling whatever space you're in, or self-contained as a cat. Some mornings, impersonating one of us, you wake, dress, eat, then vanish out the door, the room suddenly too silent, the day clear as a bell.
I remember a May morning twelve years ago, before you were you, when I woke to a landscape wiped clean as a blackboard and knew you were hiding inside a stillness different from any I had ever known. And that night in January, after our long journey, when we were almost there, and the bridge to the island disappeared, and we pushed on anyway (did we have a choice?) into black foggy bottomless space and didn't fall--
O fog spirit, are you a magician? How did you do that?
Does fog beget fog? No, you have a mother and father. So creep back to this house and with a hand solid as my own rap hard! three times on the door,
and when it opens, as it will, step through the portal and change, change back into my daughter again.
--Elizabeth Spires halloween05 (click for larger version) Our subscription to The New Yorker ensures that I still read poetry on a regular basis. And thank goodness for that. I love that this poem stirs feelings and memories for me that are surely not the same as those of the author when she was writing this (unless, of course, the author also had a daughter facing a second transplant after the failure of the first in the cold month of January). And surely this poem was written with an older child in mind, just entering those unknowable teen years. But, even at just freshly five, I look at my girl and see a mystery sometimes. It feels like every passing minute marks her progress toward leaving. Tomorrow I will take her trick-or-treating. But she will, of course, insist that I stay on the sidewalk out of sight when she goes up to ring the doorbell.

Pumpkins and Pigtails

Wednesday, October 26, 2005

words are not enough

Yesterday was the 4-year anniversary of Annika's first transplant. This was the transplant from a deceased donor, a teen-ager from somewhere in Chicagoland. I've written the family 3 times, always passing the letter through Gift of Hope in order to maintain their anonymity. I've never heard back from them, but I'm not sure what I would expect to hear from them. I think I owe it to that family to let them know that their gift was important to us, that it has meant the life of our little girl. They certainly don't owe us any response in return. I hope that they would tell us, though, if my letters to them are just a painful reminder that they would rather not have. Those letters are never easy to write. I wrote the first letter to them on a yellow legal pad while Annika was still in the PICU post-transplant. It took her quite a while to get off the ventilator (about 2 weeks), and there was plenty of time to sit in the quiet room and contemplate my own feelings about the transplant and their loss. But, still, my pen dragged heavily across the paper as I struggled to put into words the simultaneous gratitude and sorrow of that moment. The second letter was written after Anni lost her first transplant to a clot in her hepatic artery. I wanted to make sure that they understood that their child had still saved Annika's life, and that Annika was still using the portal vein donated by their child to attach the piece of liver donated by my cousin. So, in the most literal way possible, she still carried a piece of their child within her. The third letter was written after Annika's bout with PTLD. This letter was hard to write because we had again come face-to-face with the possibility of losing our child. I can still transport myself back in an instant to that scene of Dr. Whitington entering Anni's hospital room and saying, "Well, it doesn't look good." With every brush up against that unimaginable pain of losing a child, it's harder to know what to say to those on the other side of the gulf. And now another letter is due, but carrying the news that Annika's portal vein has clotted and is soon to be replaced during the upcoming shunt surgery. It is the last remaining physical link to their child. I hope this year I find the words to make it clear that their child's link to us and our daughter goes beyond the sharing of flesh and into the realm of smiles and laughter and memories bestowed because of their generosity. It's a connection more emotional, more spiritual, and more long-lasting than can be measured in years of graft survival.

Monday, October 24, 2005

ah, my little cupcake

I admit I've been avoiding putting up a new entry. I just liked my last one so much that I enjoyed having it as my top post. I hate to move it on down the page until it disappears into the archives. I have been getting way too attached to things lately, though. I finally got around to shifting the girls' closet (they share just one) from summer to winter mode. All the clothes that Anni has outgrown get put into a box for Frankie, but Frankie's outgrown things are going the way of Goodwill (Unless there's anyone out there who could use some cute summer stuff: 12 mos-2T. Drop me a line, and I'll send it your way.) I hate to admit how sad I am at the thought that I'll never again see chubby little legs peeking out below the dress that my friend, Andrea, sewed for Frankie, or hear her little voice exclaim, "futtuhfie! caduhpidduh!" as she points to her chest while wearing her green-checked shirt. OK, I'll be keeping the dress, but I'm going to have to learn to let go if I want to have room for my car in the garage. Now here it is already one week past Anni's birthday, and I've yet to post any birthday pics. For shame. Of course, Annika was still fevering on her actual birthday, so we kept the celebration on the down low (I do love the urban dictionary. My own personal fountain of youth. If only they had some sort of reverse translation for geezer-speak, which I will surely need in the not-so-distant future). To celebrate turning 5, Annika decided to try her hand at swallowing inappropriate objects. This has always been our big concern for Frankie, because, of the two girls, Frankie definitely has the oral fixation in a big way. But, no, Annika was the first to take the plunge. Just before we left for the hospital, Annika came to me and said, "Mama, accidents happen." This is a not uncommonly heard phrase around our house, so I wasn't too concerned, given that there were no tears, screams, or blood in evidence. But Annika went on with, "Well, I'm afraid that I swallowed Frankie's chain." And, yes, she really does say, "I'm afraid..." Actually, she says it a lot, as in "I'm afraid that I really do like this yogurt" and "I'm afraid that I made a drawing for you in preschool today." But this time "I'm afraid..." actually seemed to be called for. It turns out that Annika stuck the chain extension from Frankie's Diddl necklace in her mouth (for safekeeping, of course) and then got distracted and, somehow, swallowed it. Honestly, she had been pretty jealous of that Diddl necklace ever since Frankie opened it on her birthday, but I'm not going to start analyzing all the possible psychological ramifications of this swallowing transgression. I was just thinking that her G.I. tract is in a delicate enough balance without sending Diddl necklace chains through it, for goodness' sake. Jumping mouse, indeed. (Hanuman, those links are just for you. I hope you got your Diddl on over there on eBay!) As luck would have it, we were just departing for the hospital for her latest endoscopy, so they would be able to have an up close look at any chain related complications. Before they scoped her, though, she went down for an x-ray, just to check the position of the Diddl in its journey to the sea. Annika thought this was all great fun (fantastic! lesson learned!), and the techs let her go back to look at the films of her own tummy. "Can you find the chain? What doesn't belong in this picture?" the tech asked Annika. "There it is! I found it!" she exclaimed, pointing to the tiny coil near the bottom of the image. It's (don't click on this link with any teeny ones in your lap, not that it's dirty or anything) Where's Waldo for the frequently hospitalized preschool set, I suppose. I'm hoping that she hasn't decided that she's found the perfect solution for jazzing up boring days.
Anyway, she got her very own Diddl necklace on her birthday. Although I have told her that she can't wear her necklace until I get around to buying a new clasp for Frankie's necklace. Yes, we're going New. I am obsessed with examining my daughter's stools, but even I have my boundaries. So in the end, the necklace chain swallowing incident did have some logical repercussions. I'll hope this means we can avoid a repeat. Still, I'm keeping my earring collection out of Anni's reach for a while. I don't like the way she was watching them dangle today. So, yes, Annika is now 5 years old. Here are some pictures from the momentous day:
Annika says: "Help! I'm caught in a yarn trap! Why didn't anyone warn me that unwrapping presents could be so fraught with danger?"
Annika says: "Does this mean that it's OK for me to marry this bear?" (See topic: "marriage confusion" in entry dated October 19, 2005. She could very well be George W. Bush's worst nightmare come true.)
Oh, cupcake! How do I love thee? Let me count the ways.
Thou art crumbly and sticky and festooned with sublime pastel dots of sugar. Ah, cupcake. Forsooth, let me hold thee for nigh on several moments more.
Annika and Frankie had a whole new Jack Spratt and his wife* thing going on with these cupcakes. Anni decided that she wasn't so crazy for the fancy swirled frosting and so ate her cupcake from the bottom up, while Frankie was more of a top down kind of girl, generally stopping at the actual cake part, in other words, once the sugar content dropped below 99%. Despite all the birthdays, nobody is cupcaked out here yet. Yeah, we're that tough. *This seems to be the Canadian Mouse KIDiddles site. Do you think at some point someone will realize that variations on "diddle" for products aimed at kids may not be the best idea? That's what the Urban Dictionary is there for, folks.

Wednesday, October 19, 2005

Springsteen

"Mama, why are you in love with Daddy? Why did you get married to him?" Annika, obsessed for so many weeks with death, and its meaning, and possible thwarting thereof, is now turning her little inquiring mind to the concept of love. What is it? Where does it come from? Why is love when you want to get married different than the love you feel for your mama? Or your cat? Or your favorite yogurt flavor? Her relentless questions on these subjects, coming as they do from completely wacky starting points, turn into these seriously intense quasicomic scenes, "Mama, what will we do after Halloween dies?" She's like her own little Woody Allen movie, every day. Trying to explain that some things die and some things don't ("Why?") turns into a disquisition on the nature of Life itself. And then she turns to Love and we're off on a whole new set of difficult questions. Geez. You'd think that major in Philosophy would start paying off at some point. But, wait, no. I was all into the black turtlenecks and getting all snarky (before that was even a word) with the cool kids in the postmodern classes, which weren't really about answers at all. And it's not like I can blow her mind by suddenly revealing her categories to be fluid social constructs. I mean, her mind is already blown every morning when she discovers, yet again, that the Trix rabbit has managed to cram 2 different colors and flavors into 1 tiny cup. And, besides, she's already pretty well convinced that these "categories" (no, you can't marry your sister, but, yes, maybe you can marry Jacob the neighbor, if you both want to in, say, 30 years, which is really pretty unlikely if you want the truth) are mainly crap, anyway. But, still, I keep trying to answer her questions to her satisfaction. So I begin my list: "Well, I love your Daddy because he is smart, kind, funny, and handsome." Short, sweet, and totally understandable. She follows up, "OK. But what about Daddy? Why did he love you and why did he get married to you?" No response from Jörg, so I raise my voice meaningfully with a sideways glance his way, "Your Daddy will have to answer that one himself." Still no response from Jörg. "Daddy," Annika tries again, "Why do you love Mama?" Finally, he starts, "Welllllllllll. She's sweet....And she's a good mother. Hmmmmmmm. And she's a good wife...." Studiously not looking his way, I'm thinking that this question should not be so terribly hard for him to answer. The pauses are almost painful to hear. And "sweet"? "Good wife"? What in the world is that supposed to mean? Then he comes over to the table, where the girls and I are sitting. "And your mommy has a really wonderful voice." Then he tousles my hair, and heads upstairs with the laundry. And just like that, he has pulled it off. With that one surprising detail, I know that, whatever all that other stuff meant, he truly did mean it. Annika seemed satisfied, at least for the moment. For My Girls When I first saw Jörg, he was sitting across the table from me in my first graduate Logic course. He was hard to miss - tall, with long hair and one ear full of silver studs. His accent was heavier back then, too. Very hard to miss. He was in my next course, too. I half-expected to see him in my third course, as well. But that was an early morning course. It may surprise you to learn, girls, that Jörg, the man who now raises faithfully at 5:30, once refused to take courses before 10 in the morning or so. A few days into the semester, I chopped off the right top portion of my left index finger while simultaneously slicing stale french bread and reading a book, subsequently passing out and awaking a few minutes later in a pool of my own blood. I spent the next few hours in the E.R., and missed both of the classes I shared with Jörg. Thus, a golden opportunity for conversation, disguised as a request for note-sharing. (And now you also know why that finger is a bit asymmetrical). Of course, the conversation quickly turned from logic and Montague Grammar to more personal subjects. He told me about his summers spent riding his motorcycle around Europe, going to Bruce Springsteen concerts, and camping on beaches in Greece. It all fit the leather jacket image. You will soon (too soon) learn, girls, that an edgy sort of bad boy gifted with serious intelligence and a deep-voiced accent is practically irresistible. It may take a bit longer to learn that that combination frequently occurs in a common species of Jerk. As we talked of music (mainly Springsteen and Dylan on his part), I pulled out one of my favorite CDs of that time, Nanci Griffith's Other Voices Other Rooms. To my amazement, he both knew it and loved it himself. I think I would point to that moment as the instant that I was lost. The sensitivity of a Kate Wolf song added to the leather jacket and such precise notes from our logic class. Sighs are not enough. We were together for about 2 months, passionately and wonderfully, and then we had a big fight and broke it off. I don't even remember what the fight was about, but I surely remember how angry I was afterward. I was just furious, and even surprised at myself, as all my previous break-ups were fairly low-key affairs. This should probably have been my second sign that I was done for, which might have occurred to me, had I not been so busy sputtering. After a few months of ducking behind bookcases when our paths crossed in the library and sitting on opposite ends of the room during classes, we finally began speaking to one another again. At the end of the year, I found an amazing house for rent, but it was 3 bedrooms and too expensive for me to afford without 2 roommates. Jörg, who had only come to Indiana to study for one year, had been given a fellowship (the same one I had) to continue his studies in this country, and he decided to take up my offer of a room. I spent that summer with my new boyfriend in Scotland, and Jörg spent that summer back home in Berlin, dating several women, apparently, and participating in the filming of a Springsteen video shoot for a re-release of "Hungry Heart." I was the first to return to Indiana and its stifling late-summer humidity. Thus, I was also the one to discover that our dream rental house was also a dream abode for millions of fleas. Several fumigations later, I moved in with my cat. Itchy and hot, all discomfort disappeared when I walked into the house one afternoon and saw Jörg sitting there in the kitchen, still smelling of travel, but unmistakably happy to see me. I was glad I was wearing my favorite dress - the purple print wraparound, in case you girls are ever going through clothes I could never bear to give away. But we really were just friends. Great friends. Now that I was not dating him, I had no problem confessing all my many embarrassments and shortcomings. We still were taking most of our classes together, and joined forces on many a late night proof. And I spent many transatlantic hours chatting with my new boyfriend, and Jörg soon began dating a busty English graduate student. The arrangement was working perfectly. Until suddenly, it wasn't anymore. Jörg's girlfriend began to resent my constant presence, and I resented her resentment. I spent less time on the phone with my own boyfriend, and more time making needless trips up the stairs to Jörg's loft. Just to chat, you know. And then there was the shift, when we somehow knew that we enjoyed each other more than we enjoyed anyone else. I broke up with my boyfriend and Jörg with his girlfriend and we spent Christmas break together. We decided to get married within a few weeks, and set a date, completely out of the blue, for May 11. Jörg decided that he would take me to a Springsteen concert - my first and his gazillionth. We set out one night just after midnight to drive to Chicago to line up for tickets. When we finally arrived, 2 hours before the box office was to open, they were already turning people away, saying that there were more people in line than they had tickets to sell. Broke, and in love, we simply turned our car around and headed back home rather than taking the opportunity to stay and explore the city. A few weeks later, Jörg managed to score some tickets online to a show in Detroit. We left in the early afternoon, headed into a storm, and arrived at the theater over an hour early. Jörg never likes to be late for anything, you know. While we sat together up in the rafter seats singing along with the pre-show tape, he told me a story he had heard about our professor, Jon Barwise. Because he was notorious for showing up exactly on time to all social events, so the story goes, his colleagues at the university simply took to giving him a party starting time one hour later than the one announced to everyone else. "And if it's good enough for Jon Barwise, then surely it's good enough for me," was his punch line. And then Jörg's conservative approach to time paid off, when a man stopped by our seats and asked if we would like to trade our tickets in for better seats. I was pretty sure that we were being conned, but Jörg had heard of Springsteen's "man in black," who chooses unsuspecting audience members to populate the front row at a concert. So we ended up front-row, center for a wondrously intimate acoustic performance. I tell you, girls, it was like our union was blessed at the altar of rock star legendry. I guess this would be the place to insert a wedding picture. Except that Jörg looks like he's on the verge of throwing up in all of the pictures. If we had those pictures sepia-toned and then Photoshopped in a big, hairy guy in overalls and a straw hat holding a shotgun in Jörg's general vicinity, I tell you we wouldn't have to change Jörg's expression one little bit. OK, I had to throw in the wedding picture, anyway. I much prefer this picture, though, taken at the Bardsville Folk Festival in Kentucky, where we saw Nanci Griffith, after we had driven all night from an Emmylou Harris/Lucinda Williams show in Virginia the evening before. Those two days are what we have been calling our "honeymoon" all these years. So there we are. Looking in love and all freshly married. We waited 4 years to think of children. Waited to have insurance, a house, and at least one steady job between the two of us. We waited until we were ready to put the days of impromptu drives to no place in particular and late nights drinking wine and listening to music behind us. We didn't actually have any friends with children at the time, but we had heard rumors that those types of things weren't readily accessible once small children roamed your hallways. I gave away my more outrageous clothes to Goodwill, determined not to be the mom whose Hawaiian skirt and Danny the Dinosaur shirt left my pre-teen daughter blushing and rushing from the car before I could even open my own door. I bought maternity clothes. Jörg put together a crib, and investigated the family insurance plan at the university. We were ready for you girls. Then you came, sweet Annika, and we discovered that we weren't really as ready as we thought we were. But when the exhausted fog lifted enough for us to contemplate our own feelings, we knew we were happy. Of course, life got very complicated once we discovered that your golden glow was actually jaundice, and we had to learn, quickly, a whole new medical language to describe our lives. One lovely spring day, the kind of unexpectedly warm day that feels like a celebration after the long, dark days of winter, Annika, you and I were dancing. Your first surgery was nearly 6 months past, and we were beginning to relax and hope that you would be one of the lucky 25% that could avoid transplant. Maybe the worst was over, after all. Because I am too lame to have a favorite Springsteen album, we were listening to a Greatest Hits compilation. I held you and we bounced along to my '80s memories, back when my best friend, Adriane, declared Bruce to be the only white man with an ass worth checking. The doorbell rang, and it was the Bug Guy come to investigate a possible termite sighting. He turned out to be the guy from the camera store who tried to solve my flash problem on the old Nikon Jörg bought for my birthday years ago. We chatted about photography, about which I have more love than knowledge, and I confess I noted a certain boyish appeal about him. At that moment, I was happy that I had dressed you that day in your very cutest lavender outfit. It was the strangest kind of non-flirtation. "You're kind of cute! But see how very cute my child is! Isn't she adorable?" In the end there were no termites, but exactly one week after the termite inspection, our house was broken into and our entire stereo system was stolen, including the CDs that were in the changer. The Springsteen CD was not among them, although it would have been easily replaced. A few days later, you were placed on the transplant waiting list, and then hospitalized. In my memory, that year's spring lasted for just that one day. And then, 2 transplants, 10 months, and innumerable infections later you were home again. If I thought I had been happy on that Springsteen-dancing spring day, it was nothing compared to the joy of coming home after hours spent listening to the 3-note progression of ventilators being adjusted. But Jörg and I had to learn to be a couple again. Not only had we lived, essentially, apart for nearly a year, but we had come back together again as different people. And Jörg and you, Annika, had to develop a new relationship, as well, after such a long time only seeing one another for a few hours on Tuesdays, Thursdays, and weekends, when Jörg made the grueling 5 hour round-trip just to spend time with you and me in between teaching classes. You were so happy to have your daddy around every night when you came home, and you two began the tradition of evening sofa snuggling, in which you sprawled across Jörg's chest while watching a movie or listening to music. Eventually, Jörg came around to sharing Springsteen with you, too. He got out the collected Springsteen videos DVD, and slow-motioned it to point exactly where he was in the crowd. You were duly impressed, and, when watching the video on regular speed, never failed to point and shout, "Daddy!" even when the camera was panning over the skinny female models planted in the front row of the audience. He showed you the Barcelona concert DVD, and taught you to chant "Bruuuuuuuuuuuuuuuuuuuuuuuuuce!" along with the crowd. You fell in love with the opening song of that concert, "Diddy Wah Diddy", and Jörg turned it into a game, singing the first part and letting you fill in the ending "Diddy" every time. When Jörg traveled to be best man at a friend's wedding in Scotland, he recorded himself singing that song on your little telephone toy. You carried that telephone everywhere while he was gone, even holding it up for strangers in the store to hear. Proof that you had a daddy and he loved you, even when gone. Developing your new relationship came naturally and easily. I suppose it's been a bit harder between Jörg and me. We have had to learn to be a couple, who are also parents, but parents to a child who is simultaneously so normal and so unusual. We don't always agree on the best course of action. One thing that we both agreed on, though, was that we wanted you to have a sibling. And so came Frankie. Jörg brought you to the hospital to meet your new baby sister. You stroked her head as she slept in my arms. Frankie awoke and began crying. You jumped back and began crying yourself, afraid and upset and confused. Jörg scooped you up and told you that you hadn't done anything wrong, that babies just cry a lot because they don't yet know how to talk to let us know what they want. You giggled with relief to hear this, and you still stroke her head nearly every day, wondering at the softness. I think we are more keenly aware of the uncertainty in life because of your complicated medical condition, and perhaps value the certainty of each other a bit more because of it. The recent drama of your bleeding varices and upcoming surgery has been draining, as Jörg and I have clashed over the best approach to take with your doctors. But still we talk and spend our evenings together companionably after you girls have gone to bed. With your last hospitalization, Jörg contacted Springsteen's management to see if he could come to play "Diddy Wah Diddy" for you. The request was taken quite seriously, but in the end it didn't work out. Still, I'm quite certain that you were far more excited that your daddy spent the night with you in the hospital than you ever would have been over a visit from Bruce Springsteen. May it ever be so. So the answer to your question, "Why do you love Daddy?" is a lot more complicated than the one I gave you. In the beginning, it certainly had a lot to do with feelings and emotions and glorious imaginings of an unknown future together. After nearly 10 years, it has more to do with what I've given you here. It's a remembering of the past that tosses out the petty fights and hurtful words spoken in high emotion. It's valuing a story of life that we have created together, and wanting to give it an ending that is worthy of its beginning. (and Happy Birthday, Jörg)

Sunday, October 16, 2005

Fever Pro

Home again, but not without incident. Another endoscopy and round of sclerotherapy on Friday, where the doctors discovered that her four huge varices are still four huge varices. In other words, the sclerotherapy is not really having much success at shrinking them. Bummer. However, we are now officially on the surgery schedule for Nov. 30 for the Rex shunt. Anni will be admitted on Nov. 29 and then our surgeon, Dr. Superina, has scheduled the entire day for her. He also made sure that his calendar didn't have him leaving town anytime soon after performing the surgery, so that makes me feel better, even though that date leaves us smack in the middle of holiday scheduling. Annika told Jörg that she didn't like missing him and Frankie while she was in the hospital, so Jörg took Friday off from the university and we all traveled together. Just like a family vacation! Except with needles and microscopic cameras and noxious chemicals injected into the throats of small children! Truly Annika enjoyed having everyone around, and by "everyone" I mean especially Frankie. Frankie crawled into bed with her, stroked her head when she was crying, and murmured "It's OK, Nonny, it's OK," when things got tough. She took her position as companion and comforter quite seriously. Everything went relatively smoothly - I.V. in on the first try, and pretty close to where Annika requested that it be placed, blood draws well done ("Please be careful with that needle! I like it slow so you don't miss!" she explained to the phlebotomist each time), no gas mask, and the anesthesiologist even switched sedation when she spotted the white syringe and told him that she didn't want the white medicine (or did he just color it? I don't know. Anyway, Jörg tells me that it was pink instead.) But then she woke up all friendly and ready to eat. And promptly threw everything back up. Again and again. So they gave her the usually miraculous anti-emetic, Zofran. To no avail. Because we really wanted to go, they went ahead and released us on Friday night, even though Annika had yet to keep anything down beyond water. We got home close to midnight, which was when we discovered that Anni had a fever, 102.5 That's not terribly high for Annika, but I was going to give her some Tylenol, anyway. Especially since I thought her throat might be hurting. But she curled up in a ball and moaned, "No more medicine! Pleeeeeeeeeease!" So I let it go. At 2 a.m. she was burning up. The thermometer registered 105.2 Now that's more like it! So I stripped her down and turned on the ceiling fan when she refused to take a bath. And, of course, she got the Tylenol. A few hours later she was back down to 102, and by the time we got to the pediatrician's office she was, of course, down to 99.8. With no sign of any infection, we headed back home. Annika managed to keep down one yogurt and 4 crackers, so we counted the day as improvement. The night brought another fever, but nothing very spectacular. So I think I'm going to count this trip as falling on the mainly "fun" side for Annika. This was due not only to the excitement of having Frankie and Jörg with her this time, but also in no small part to the newest addition to Annika's animatronic army, Furby. Oh, oops. Furby is actually an "emoto-tronic" friend. Excuse me. Our friends, the Ketters (you may remember their daughter, Natalie, with the trademarked Huge Laugh from one of Annika's September hospital stays) sent this little guy/girl/thing (?) Annika's way. Annika and Frankie are both in love with him/her/it. Here's Anni opening the package just before we left for the hospital:
The most exciting feature? By far? He/she/it tells knock-knock jokes! Both girls have been giving original knock-knock jokes their best shot lately. (A typical Annika example: "knock-knock" "who's there?" "banana" "banana who?" "Banana, you peeled your pants!" followed by much uproarious laughter. A typical Frankie example: "knock-knock" "who's there?" "banana" "banana who?" "ummmmmmm, BANANA!" followed by a confused, but slyly proud smile.) Furby provided much happy distraction during this stay, so thank you Becca and family. As usual, though, the best thing about going to the hospital is coming back home again. Especially when you're almost 5. Birthday pictures coming soon.

Monday, October 10, 2005

You know you're a mother when...

you get your birthday song sung to you while you're taking your morning pee. So 35 is here, and for 11 days Jörg gets to be 2 years younger than I am. Usually these are his 11 favorite days of the year, but all his "grandma" jokes are undercut by the fact that he smells like a Ben Gay factory exploded all over him. (OK, that link wasn't to Ben Gay cream, but Emu Oil is just a lot funnier. "It penetrates right through!") As usual, the birthday song (with its awkward tinkling accompaniment and my bleary "give me a second, will you" look) was the main celebration of the day. We spent the rest of the day shopping for Annika and Frankie's combined birthday present: bunk beds. The sleeping arrangements have been difficult for the girls of late. Annika had been sleeping in her twin bed, which was just a mattress on a frame. We only were using the frame because it allowed us to store out-of-season clothes under there. It was all a pretty minimalist arrangement. Then Frankie decided that her nights could no longer be spent alone. We soon discovered that one twin bed was not enough to contain Annika and floppy Frankie, who kicks and flips all night with predictably disastrous results. At the same time, though, Frankie decided that her crib was surely Dante's first circle of hell. So we ended up inflating an air mattress, which we placed on the floor between the twin bed and the crib. This meant that the floor of the room was no longer traversable. But it was the only way they could sleep through the night. Frankie still kept trying to sneak off the bed down to where Annika was sleeping, of course. This wouldn't have been so bad if she had simply cuddled in to sleep beside Annika, but she always always threw herself over Annika's body as if she were a little cat seeking the warmth of a gently expanding and contracting abdomen. Needless to say, Frankie weighs a bit more than your typical cat, and Annika was less than appreciative. We really had no idea what we were going to do. Then we went to ToysRUs to let the girls choose what they wanted to buy with their birthday money from my parents. Frankie did not show any clear preferences, but Annika really wanted this Cinderella vanity (Yes, "magical" and "talking." Oooooo.) Our ToysRUs store is really horrendous about marking the prices of toys, and it looked like it was $35. Which already seemed like plenty for a rather tacky piece of furniture that looked like it might break in approximately 2 weeks. When we found out that it was really $70, we told her that it was too expensive, but offered to let her buy a real vanity instead. She loved that idea, and so I took her to the cheapest place I know to buy furniture (since the garage sales are mostly over around here), Big Lots. The idea of buying a vanity was completely forgotten, though, when she spotted a bunk bed display in the store, which Frankie found pretty fascinating, too. We didn't buy the one at Big Lots, but they did get a set of bunk beds after much debate and measuring and then more debate. Jörg put them together by himself, including lifting the top bunk into place, which is why he's currently smothered in Ben Gay, and smelling like a retirement home. Annika is sleeping on the top bunk. And I know, I know that kids are supposed to be 6 before they sleep on the top and she's only 5 (in 6 days). But please don't write me to tell me what a horrible, irresponsible parent I am. I just think it would be boring to go into too much detail about why I think it's OK for her to sleep on top. Actually, the real safety problem was with Frankie on the lower bunk. She's quite the mover at night, and there was an unavoidably large gap between her mattress and the wall that we had to barricade to prevent her slipping between the wall and the mattress in the middle of the night. Annika is now happy that she can sleep at night in the same room with Frankie, but without fear of being ambushed in the middle of the night. Frankie's legs are too short to climb the ladder, thank goodness. Actually, even if they weren't too short, I don't think Frankie would attempt it by herself. She's apparently inherited a fear of heights from both parents. I have promised Annika that we will also paint the walls in their room, with each girl getting to choose one color. Thus eradicating the evidence of Annika's experiment in Harold role-playing: So that's it for the girls' birthday presents. Annika was fine getting the bunk beds instead of toys, and Frankie is still too little to care much one way or the other. Every day is like a birthday as far as our happy little Frankie is concerned. We did have a tiny little party for Frankie on Sunday. Anna and Demi, ages 12 and 10, came over. I had Pooh hats left over from Annika's second birthday party, and the girls and I made cupcakes. Frankie loved opening her birthday cards, especially the hand-made one from Jörg's mom that included Frankie's picture on the envelope, and the Diddl necklace that Jörg's father and step-mother sent was a big hit (Click that link at your own risk. You may suffer an over-cutesied attack. Remember, "In Pimboli you have the loveliest southwest crumplish snuggelyhug for every occasion!" And that's no Google translation, either. Keep in mind this little mouse guy is no niche product. I cannot exaggerate how incredibly popular Diddl is in Germany. And Annika and Frankie fell for him, too. But of course.) During the party, Frankie got lots of birthday wishes over the phone, which tickled her no end. She especially loved that all 5 members of the Cochran family (my sister's family) took turns singing the birthday song to her. She sang the birthday song to herself as I was rocking her to sleep last night. We should be home from Anni's next round of sclerosing this week in Chicago just in time for her birthday, and then Jörg's comes three days after that. It's just one non-stop party around here, you know? (You can see more birthday photos here)

Tuesday, October 04, 2005

whiplash

idyllic

Here it is, the first week of October and the girls and I went and frolicked in sunshine-y heat this morning at a local park. We got so sweaty that we decided to go home and play in the Mt. Tiki-Soki Water Volcano, which we bought a few weeks ago at the ToysRUs summer clearance. Well worth the $7. Probably even worth its original price tag, given the maniacal abandon of both girls' laughter. I half-expected Frankie to fall to the ground and start pounding her fist as tears streamed from her eyes from too much mirth. Annika kept the hilarity coming with her experiments in physics, which mainly consisted of seeing which object would fly the highest when placed on the mouth of the volcano just before it squirts (answer: a handful of grass, nicely clumped together with some root system intact so it didn't just explode when the water hit it). Then Annika raced her Big Wheel down the driveway along a chalk racetrack she had drawn herself while Frankie went in a very earnest search around the yard for dog poop. Annika found some one time, and Frankie has been a bit jealous of that Big Find ever since. After that, Annika used her chalk to draw two circles, declared "dance circles." So, for a treat, I put the ridiculous Euro pop musical confection*, which Annika discovered and promptly fell in love with during our recent trip to Germany, in our car CD player and opened all the doors so that the girls could boogie in the driveway. In their chalk dance circles. Then again to the backyard, where the girls made and destroyed a century's worth of sand castles while I swayed in the hammock chair, head back investigating clouds to the soundtrack of their unbearably cute but oh-so-serious play negotiations. In the interest of full disclosure, I will confess that getting both inside involved tears, screams, and an unfortunate peeing accident. But then we had dinner and the girls snuggled with Jörg on the couch watching Bruce Springsteen videos. Frankie did some naked dancing due to some indecision concerning the state of her bladder. Annika, always interested in the finer points of geography, questioned Jörg relentlessly during Springsteen's cover of Diddy Wah Diddy("She don't come from no town. She don't come from no city. She lives right here in Diddy Wah Diddy"): "So, Daddy...Is Diddy Wah Diddy a country?" Then we tucked two exquisitely sweet-smelling girls into bed, where many stories were read. Annika proudly "read" three of the stories herself, with the most amazing ear for indicating voices and the sort of masterly intonation that leaves kids breathless in the hands of a great storyteller.

and not so much

Last night Jörg and I had a big fight over whose nightmare scenario is the most likely to happen. He keeps pushing to schedule the surgery for Annika because he is afraid that she will have a catastrophic bleed if we wait too long to relieve the pressure in her portal vein. I keep dragging my feet and asking him not to push because I have this inescapable fear that the surgery is going to fail and leave her sick and desperately in need of a transplant. In the end he successfully convinced me that even if the Rex shunt does not work, they will be able to do a different shunt that should ward off catastrophe. I'm not sure if I convinced him of anything, but at least tensions between us had eased by the time we went off to bed. It's Love, Crisis-Style. Lordy. Have I mentioned that Jörg is in the middle of preparing his tenure case? Yup. It's due very soon. And although I can't imagine that they could possibly turn him down, it's also true that his department has not had a successful tenure case in something like, oh, fifteen years. And the guys who fixed our leaky roof just told us that the roof needs to be replaced. Um, can that wait until we know if Jörg will still be employed, please? ~~~~~~~~~~~~~~~~~~~~~~ * If anyone is interested in hearing the rest of that song (and who wouldn't be?), it's called "Dubi Dam Dam" (pronounced "dooby dum dum," although I would love it if I could sing "damn" over and over again while dancing), and it's by a group called Banaroo (I give you the ever delightful google translation of the German Amazon page: "Welcomely in the Dubi country..."). I played this song for Norma's husband, who was there doing some sort of MRI research thingamajig, in Germany. He asked, after hearing the first 30 seconds or so, "Are there any meaningful lyrics?" And I told him, "It depends upon your definition of meaningful. There's some sort of alien visitation involved." (Complete lyrics here) But I'm not giving him the high road here. He busted out some Wiggle Tunes during his daughter's birthday party. "Fruit Salad. Yummy, yummy. (6X)"

More on Grey's Anatomy

I just popped over to the Grey's Anatomy discussion forum thread, and it seems that some people found this episode more offensive than I did. ABC's Grey's Anatomy thread regarding this episode I'm going to copy out the three responses that I found most interesting there: Posted: Oct 03 @ 02:12 PM by: actual_paramedic (1 Posts in the last 90 days) Registered: Oct 03, 2005 I'm an organ procurement coordinator for the past four years in the Midwest, and organ transplant/donation issues seem to be a recurring theme we might come to expect from Grey's Anatomy in the future. I'm a fan, and like many on this thread have suggested, I watch Grey's Anatomy for entertainment value only... and because I think Katherine Heigl is hot (much to my wife's dismay)! I wanted to share a couple of things with all of you who read this thread about donation... The process to declare brain death is structured and requires that the patient meet certain criteria for brain death testing to even begin. The clinical and confirmatory exams are performed independently of each other to assure that brain death is present. True brain death INCLUDES the death of the brainstem, as well. There is no national standard for declaring brain death. In some states, declaring brain death requires two physicians (one of whom must be a neurologist or neurosurgeon or neurointensivist) performing brain death exams a certain interval apart, perhaps 6 or 12 hours. Other states may require only that the patient be declared brain dead by a licensed physician. Brain death is defined as the irreversible cessation of brain and brainstem function. Brain death is permanent: when brain cells die, they are permanently dead and do not regenerate themselves. It is a clinical diagnosis, recognized universally. Many states recognize the time brain death is declared as a person's legal time of death. In every case, brain death testing must be performed in the absence of known causes that would cause a patient to be totally unresponsive. For example: a brainstem tumor like the one last night's potential donor had would have been a reason not to perform brain death testing: it is a diagnosis which is potentially reversible through surgical intervention. To find out anything and everything about brain death, I urge anyone who has a minute to visit www.braindeath.org. The portrayal of transplant recovery teams hovering around the OR is erroneous and inaccurate. Recovery (harvest) teams arrive shortly before the scheduled OR time, and may be late if they are flying in from a distant transplant center. Heck, they're usually a little late even if the transplant center is just across town! If they are late, we often stand around doing a lot of nothing in the OR waiting for them to arrive. The process surrounding donor families and the donors themselves is one of the utmost respect shown by everyone directly and indirectly involved with a donor case. Abuses of the organ allocation system, like the situation with the liver in California which came to light last week are always uncovered by auditors and the penalties are stiff. The transplant program has been closed, the surgeons and staff have been relieved of their duties. The federal government provides stiff fines and jail time for those who sell, illegally procure, or deliberately abuse the organ allocation system. Also, in certain cases, you do not have to be brain dead to be an organ donor. This type of donation is called Donation After Cardiac Death (DCD) or Non-Heartbeating Donation (NHBD). It is slowly being implemented across the United States. In other countries, DCD/NHBD is the only type of donation practiced and is their only source for donor organs. Japan only recently began recognizing brain death! You can learn more about DCD/NHBD organ donation by visiting: www.organtransplants.org/understanding/death/ Finally, signing your driver's license is a good thing, and so is having a living will or medical power of attorney/durable healthcare power of attorney, etc. The most important thing anyone on these blogs can do to support donation is to tell your family you do or don't want to be an organ and tissue donor. It will relieve them of such a burden, as this is one of the decisions families can be split over when they're trying to guess what you would have wanted. You certainly won't be able to speak for yourself. OK, off soapbox. Eric ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Posted: Oct 03 @ 05:43 PM by: donationprofessional (2 Posts in the last 90 days) Registered: Oct 03, 2005 In their 10/2 episode, Grey's Anatomy did a wonderful job of accurately and yet dramatically depicting an ethical dilemma around living donation. It is our understanding that the writers consulted with an Organ Procurement Organization to receive input on this storyline and we congratulate you on the outcome. The son-to-father liver donation storyline was accurate and powerful in many ways. Specifically the storyline:
  • taught the public that you can donate a liver while alive
  • highlighted that a candidate must stop drinking before getting on the waiting list
  • ensured that the father was listed with UNOS before transplantation was considered by the surgeons
  • focused on the fact that the son had been provided with counseling to make this difficult decision
  • mentioned that the liver can regenerate in a matter of weeks
  • showed that you must be over 18 to be considered a living donor (this was a change you made to the storyline to assure accuracy)
Your episode could have been a potential award winner for the Sentinel for Health Awards if you had requested and received equal input for the deceased donation storyline. Because you did not ask donation professionals to guide your writers on the deceased donation process your depiction of the deceased donor was not only inaccurate, but also extremely harmful to the public's perception of organ donation. Instead of sharing how brain death is diagnosed and assured, your storyline depicted a fictional circumstance that reinforces one of the most prevalent misconceptions surrounding donation: "They won't work as hard to save me if I'm a donor." Specifically the storyline:
  • utilized antiquated and objectionable terminology, "harvested¬®, rather than the correct terminology, "recovered"
  • implied that care and diagnosis of a potential donor is secondary to getting their organs
  • inaccurately said that people are called to receive organs before a patient is confirmed to be brain dead
  • implied that MRI's and brain scans are not part of determining brain death
  • implied that a neurosurgeon would not normally be part of the pronouncement of brain death
  • gave the impression that the six people who were to receive the organs were a priority over the care of the brain damaged patient
  • provided the improbable situation of a patient recovering fully from a brain tumor on the brain stem
This conflict between the powerful, accurate and dramatic living donation storyline and the harmful, weak and inaccurate deceased donation storyline underscores the need for your writers to continue to work with donation professionals to receive information about the donation process. As we work daily to inspire people to donate life through organ and tissue donation we need hit shows like Grey's Anatomy to find and tell the truth and not perpetuate myths and misconceptions that keep people from saying yes to donation. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~ And, finally, an observation that I found to be an astute statement of the "chill-out" faction: Posted: Oct 04 @ 08:17 AM by: _Neenie_ (1 Posts in the last 90 days) Registered: Oct 04, 2005 I think the idea that television has turned us all into zombies who immediately imitate/believe everything we see on tv is a really basic, naive media theory. Its like saying "TV makes us violent, and gives us all anorexia". We are not all the cultural dupes some of you want to make us out to be. I truly feel sorry for anyone who believes a passing reference to organ donation in a soap opera style television show is enough information for them to decide whether or not to donate. If there really are people who would do this, we as a culture have a much bigger problem than an insensitive writing team on grey's anatomy. Television is not for learning, it is for entertainment. If you want to know about something, read about it. Read Neil Postman's "Amusing ourselves to Death It seems like the only people who are concerned with this issue are a) those who work in a hospital, and b) those who are waiting for, have received, or has a relative who is waiting for or has received an organ donation. Keep in mind that you have a special interest in the issue of organ donation, therefore any reference to it going to be more salient to you than to others. I have a feeling that most people watching the show, like me, who are potential donors, were really more interested in the drama, the entertainment value of the show. I don't watch medical dramas to learn about medicine or medical terms, In fact I assume they will not be one hundred percent accurate, I watch them to see if one hot doctor will get together with another hot doctor . The medical stuff is just background, and I suspect this is the same for most people. I don't work in a hospital, but I have been in one, and I assure you, as much as everyone seems to love dissecting the "reality of the show, if there was a show that portrayed a hospital exactly like it is in reality, no one would watch it. ~~~~~~~~~ I think the most interesting point made by the last contributor is that it is primarily people intimately connected with organ donation that find these episodes concerning. I certainly know that my reaction is colored by my own experiences, and I suppose also by my need to see donors and the donation process presented in a positive light to assuage the guilt that seems common to many transplant recipients and their families. And, of course, I hope that the number of organ donors increases, and it seems that presenting positive instances of organ donation would contribute to that effort. As much as I appreciate the "chill out, it's only entertainment" argument, I do wonder about its accuracy in this case. Certainly there have been many cases in which misconceptions on some issue are rampant, and TV was used effectively to combat these myths. In particular, I'm thinking of the panic surrounding the transmission of HIV in the '80s that had people thinking, wrongly, that the virus could be spread by normal social contact, such as hand-shaking. The entertainment industry was used very effectively as an educational tool to debunk these myths, and the industry was soundly criticized when it strayed into areas that perpetuated misinformation. So I do think that, in cases where misapprehensions are informing people's actions, TV and movies should be careful not to reinforce those fears.

Monday, October 03, 2005

Grey's Anatomy: Once More, with the Same Feeling

Scrivener sent me an email asking about my reactions to the latest episode of Grey's Anatomy, which again dealt with the topic of organ donation. A few months back, I addressed the topic of organ donation in that show and another, thankfully short-lived one. Phantom Scribbler began a link campaign for my letter, in order to boost the letter's placement when googling for information on organ donation. I'm not sure that I ever properly thanked her for her hugely successful efforts, so here's a big Thank You to her. Now, last night's episode (I'll add a link when I find a recap) was certainly no advertisement for organ donation, but at least it did not leave me steaming over inaccuracies in its portrayal of the process. The fact of the matter is that organ donation is an area with a number of ethical gray areas, especially when it comes to the matter of living organ donation. Here's an informative article that raises some of the main objections to living donation. But even when you are dealing with deceased donation, ethical issues arise. So, for instance, you get the debate over whether prisoners convicted of violent crimes should be allowed on the transplant list, or whether death row inmates should be allowed to donate organs. AIDS patients were frequently not transplanted, following the reasoning that the 1-2 punch of HIV and simultaneous Hepatitis-C (the usual culprit leading to liver failure for those patients) meant that a transplanted liver did not stand much of a chance, until the recent move allowing HIV-positive organ donors to donate to other HIV-positive patients. In the area of liver transplantation, the United Network for Organ Sharing has implemented a new system that seeks to divorce social valuation from the question of who receives an organ, assigning instead based on greatest medical need, but even in this system disturbing inequities across geographical boundaries were noted. There are even ethical issues surrounding the definition of death for potential organ donors, and the possibility of insisting that organs are only given to those that have agreed to be donors themselves. These ethical questions are certainly not abstractions for us. As we draw ever nearer to Annika's Rex shunt surgery, we are well aware that, if the surgery fails as the doctors have warned us that it well may, another transplant will be her only hope. But Annika has already had two transplants. What about all the other patients waiting who have not even yet gotten their chance at one? And even pushing ethical issues aside, the process of organ donation is fraught with emotional confusion. Every year, we celebrate the anniversary of Annika's first transplant, which falls on the same day that another family marks the loss of their child. There is no way to untangle the two events, and my only comfort is the hope that our donor family's pain is accompanied by some comfort in knowing that their child was able to save another child's life. But I have no idea if the heart really works that way. But on to the Grey's Anatomy episode. I think this episode did a much better job at portraying the process of organ donation. One of the major problems I had with the last episode was in the way that the doctors responsible for the care of the donor were also involved in the organ procurement (and also for the care of the recipient). In addition, the show made it seem like the distribution of organs was somehow a matter of luck and connections. Both of these problems were actually directly addressed in this episode. At one point the doctor for the recipient (in this case of a living donation) was addressing the potential (living) donor, and she was resoundingly redressed for even venturing in to express an opinion. Conflict of interest is resolutely not allowed in the area of donation, and most especially for living donation. Good for them. Next, it happens that there is a potential brain-dead donor being flown in to the hospital for organ procurement (again with the word, "harvest", though. Ick. A person is not a field of corn.) In the old school medical drama world of happy coincidences, that donor would have been earmarked for the patient in need right there in that hospital. In this episode, it was made clear that the doctors in the hospital have nothing to do with the allocation of organs. That role falls to an independent organization, UNOS. Again, good for them. That being said, this episode was not exactly upbeat about organ donation. First, the patient in need was an alcoholic wife-beater who killed another driver in a fit of road rage. It was made clear that he was no longer drinking in order to qualify for the list (but given his evident inability to control his domestic violence, you had to wonder about his ability to conquer an insidious disease like alcoholism), but to say he was an unsympathetic character is certainly understatement. I don't know about you, but I certainly hope that, if I die in such a way that my organs can be used, they would go to people like my daughter and all the other recipients I have met with their generous outlook on life. Still, the organization that allocates organs strives to make medical judgments, not moral ones (insofar as the two can be separated). A patient that continues drinking will destroy a transplanted liver even more quickly than his/her native one, and thus is not a good candidate for transplant. This, perhaps, is a moral issue (whether or not the recipient will be a good steward of the new liver), but the reasoning behind that decision can be explained in medically objective terms. The question of whether or not a life is worth saving lands squarely in the territory of moral ambiguity, and squarely in an area that UNOS (and the medical community in general) disregards, and rightly so. Their business is saving life in all its beauty and all its ugliness. The idea of giving organs, a scarce resource, to those that have caused harm to their loved ones and society in general is a distasteful one. But I would never agree that such considerations should become part of the allocation process. To deny a person the possibility of change and restitution seems to allow a sort of righteous certitude that I find cynical at best, and dangerous at worst. The second squirm-inducing issue was the plot line that involved the ostensibly brain-dead patient that was flown in for "harvesting" (again, ick). Thanks to the actions of one of the show's residents, the patient was discovered still to have some functioning in her brain. The surgeons who were there to collect and deliver the organs to the waiting recipients greeted this news with disdain and a horrifying disregard for the rights of the donor. As they pushed to go ahead into the operating room where, they claimed unconvincingly, "Of course we'll wait until she's dead..." the heroic neurosurgeon pushed for an MRI to investigate further. As a result, the doctors discover that her tumor is operable and she will have a good chance of recovery. This sequence again raises the specter most disturbing to those that oppose organ donation: the possibility of being rushed to death in order to obtain their precious organs when they, in fact, could have been saved. It is this possibility that flashes before people's eyes when I ask them about being organ donors and they shudder and say, "No, thanks." The irony here is that the patient's life was probably saved precisely because she was an organ donor. She was flown to the larger hospital for the procurement of her organs (I can't write "harvest" again, even in quotes), where she was double-checked for signs of brain activity, which is standard procedure, and when activity was detected, she was in a place with a surgeon capable of successfully operating on her tumor. Had she stayed at the smaller hospital and not been double-checked (as all organ donors are), she might have been removed from the ventilator and, thus, died. I confess I do not know the procedures used for removing ventilator support when a patient is declared brain dead, but is not an organ donor. I do know, though, that a declaration of brain death is checked and carefully double-checked before a patient is considered for organ donation. In this case, the problem was discovered in the double-checking part of the process. I'm not sure, though, that this connection would be foremost in the minds of viewers, who most likely latched on to the horrific idea of having their organs removed before their time was up. As an organ donor advocate, I hate the idea that any surgeon in charge of procurement would be so callous in disregarding the possibility that the donor's life might be saved. But I suppose that it would be naive to think that there are no such doctors out there. Surely there are bad doctors in all areas of medicine. A few months ago I never would have imagined that an attending (not just a freshly minted resident) doctor* would hang up on a distraught family member asking reasonable questions. They don't hand out angel wings along with a medical degree, I suppose. So in the end I think that this fear is actually caught up in a larger issue, fear of bad doctoring. And just as it is too bad that some people's distrust of doctors will lead to an unnecessarily early death, it is also too bad that people will die because others choose not to be organ donors out of a similar fear. I can at least rest assured that organ donors are checked and double-checked before being accepted as donors. And I still hope that fear and mistrust are not the primary motivations that lead people to say "No" to organ donation. I do have to give credit to the writers for giving voice to exactly this sentiment on behalf of transplant recipients. When Bad Doctor expresses impatience that there are 6 patients waiting for these organs, Hero Doctor responds that he is aware of this and also that they will be happy to know that the organs came from someone who was actually dead. All in all, it was hard to come away from this episode feeling all warm and fuzzy about organ donation. In fact, it felt downright uncomfortable. But the fact of the matter is that organ donation is not all about warm and fuzzy. Someone, beloved by others, has died. And no matter how beautiful the gift, there is still a profound sadness that should never be ignored. And we should always stand guard for the rights and dignity of potential donors. At least the show did not distort or confuse the process in the interest of storyline this time. I'll hope that a future story might allow for some of the genuine joy that results from organ donation, even if it is alloyed with a sorrow that it is hard to contemplate. ~~~~~~~~~~~~~~~~~~~~~~ * I know that there are Chicago liver families out there who read this journal and have been wondering which of the attendings actually hung up on me. I'm happy to report that it is not one of Annika's regular doctors, and feel no compunction about naming names: It was Dr. Saps. Please feel free to tell him that hanging up on a patient's family is unacceptable behavior in your book, if he happens to be on service when your child is admitted. I do think it's a good thing for doctors to know that families network and that their bad behavior is noticed. We also filed (well, Jörg did) an official complaint with patient relations, although they do not let you know what action, if any, was taken in response.

Sunday, October 02, 2005

dirty rotten liver blues

The world lost Haley last night at the terribly tender age of 11. She was the girl who penned and sang "The Dirty Rotten Liver Blues" to capture life with liver disease, among many other songs collected on Haley's Hits. She was the child who lived through a brain bleed, and when warned that another bleed might affect her sense of touch, responded "Well, as long as it's not my sense of fashion." She was the girl who wanted to start a charity offering cool hats to kids who had lost their hair in the hospital as she had, and offered the following hospital style tip, "Never let a neurosurgeon cut your hair." She was the girl who inspired some of the most amazing, heartbreaking, and belly-laughable stories as told by her mother, Cheryl. My heart is well and truly broken. To all of Haley's family, and also to the large circle of friends and fans that Haley inspired these many years, I send you my deepest sorrow and my fervent hope that you find some peace, somehow. Thank you, Cheryl, for sharing your daughter with all of us. She was a wonder.