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.

Wednesday, November 30, 2005

done

The most important news first: Annika is out of surgery and doing fine in the PICU. It was over 8 hours from the time they took her out of my arms until we spied her being wheeled out of the O.R. That's nearly as long as her first transplant, but nowhere close to the 12-hour marathon of her second. Unfortunately, the Rex Shunt did not work for her. The surgeon came out after 4 hours and told us that every time they tried to move the bowel to get to her portal vein in her liver, she started bleeding like crazy. The good news is that they were able to do a different kind of shunt, the spleno-renal shunt (also called a Warren shunt). I don't have time right now to google up some articles to link to, but the main difference is that the Rex Shunt would have restored blood flow (currently blocked by the clot) to her liver. The spleno-renal shunt instead redirects the blocked blood flow down toward her kidneys. This has the effect of instantly reducing the pressure that has been causing her to bleed from her esophagus. But it doesn't restore blood flow to the liver (and remember that the portal vein supplies some 80% of the liver's blood supply). Usually the spleno-renal shunt is done as a stop-gap measure to deal with bleeding varices for a patient who is waiting for a liver transplant. Obviously, we don't want to be waiting for a liver transplant (again). However, the surgeon said that she has developed her own new blood vessels which are sending blood to her liver, and her liver looks really good. So we're hopeful that this shunt might do the trick for her, even though it wasn't the shunt the doctors hoped to perform. Dr. Superina (her surgeon) sounded very upbeat, and that really does mean a lot to us. There will be a lot going on in the next few days, but right now I'm looking forward to just seeing her beautiful eyes open back up again. Perhaps tomorrow, if all goes well.

3 hours in

They took Annika back at 10 a.m. this morning. At 12p.m. they called to say that they finally had placed all the lines she needed (she will need lots of I.V. access in order to quickly transfuse or give fluids as she needs them), and they were ready to begin the incision. Before taking her back, they told us that they anticipate this will be an all-day surgery. Jörg and I are waiting for updates, which are coming every 2 hours. Mostly they will just call to say where they are in the process, and (hopefully) let us know that she is stable and doing fine. Perhaps needless to say, I got very little sleep last night. Annika was so tired by the time we got settled in to her room up on 6 that she was crying at the slightest suggestion she try something new (the pharmacy sent up liquid med's rather than pills, and some of the pills that were sent up were the wrong shape!) It was 9p.m. before things quieted down enough to try for sleep, but when I settled into the bed beside her, she was still kicking and rolling and fidgeting. After a few minutes she declared, "I'm having trouble going to sleep." I asked her if she would like to try laying on my chest. I was thinking of her putting her head on me, but instead she climbed all the way up on top of me. I wrapped my arms around her, and she was snoring in just a few minutes. In the morning she resisted all our attempts to get her ready to go, but in the end Jörg carried her all the way down to the surgical holding area, and she was pretty happy about that. We played the princess memory card game she got yesterday (thank you person from Massachusetts whose name I did not recognize on the box...pseudonymous blogger?) while we waited. She narrowly defeated me, but I was playing upside-down. When they came to get her, we explained that she really did not want to have the central access line in her neck, if at all possible, and that she did not like it when they used "the white stuff" to put her to sleep. She gripped me tightly, and asked me to carry her "like you carry Frankie." She told us that she was afraid to go to sleep, and we told her that it was OK to be scared, but that the doctors were going to take very good care of her. Before they carried her off, they gave her enough versed to make any 5-year-old smile, and all we saw were dimples and blurry, blissed-out blue eyes as she headed back. When they called at noon, they told us that they managed to get the central line in her chest. No neck I.V. We'll take the good news as it comes.

Tuesday, November 29, 2005

keeping a straight face

Annika has declared that I am no longer allowed to laugh at her. Ever. I tried explaining to her that I laugh at the things she says and does because she makes me so happy. "And when you're really happy, sometimes you just have to laugh!" Unconvinced, she is standing firm in her "Don't laugh at me" rule. I know that enforcing this type of rule is her way of asserting her developing maturity, and I'm also guessing that there might be some dynamic from preschool that she's picked up on (like maybe Mrs. Val told the kids it wasn't nice to laugh when a classmate was having difficulties). But, still. It's somewhere close to impossible to keep a straight face when your kid says things like this: 1) Annika is sitting on the toilet at Lincoln Park zoo. As usual, she approaches the job with a leisurely attitude. I'm leaning against the stall door, studying the ceiling to fend off boredom. I hear the sound of ripping toilet paper, and look down, eager to finally make an exit. Instead, Annika is holding a tiny square of nearly transparent toilet paper aloft. "Look, mama!" she exclaims breathlessly. "I'm going to save this for my Memory Book!" 2) Annika talks her grandma into letting her wrap up in her favorite jacket, a blue fleece number with flowers appliqued on the pockets. As we sit in silent companionship around the kitchen table, a very audible fart is heard from Annika's corner. A few seconds later, Annika buries her nose her grandma's jacket, wrapped tight around her. "Phew! Grandma, your jacket really stinks!" 3) Annika hops onto my lap and gives me a big hug and kiss. Snuggling in, she spreads her hand right over my chest. "Mama's breast." She sighs. "It's the best!" 4) On her way into the hospital this afternoon, Annika holds up her index finger, drawing my attention to the hangnail that developed last night. "Could you tell the doctors to take care of this for me when I am asleep for surgery?" I tell you, I think I have done some serious cheek and lip damage in the past few weeks trying to respect the "No Laughing" edict. But then there is parental difficulty of another kind altogether. This afternoon when I announced it was time to go check in to the hospital, Annika tried every stalling tactic imaginable. I finally got her out the door, but as we headed up the familiar hill leading to the revolving hospital door, she held my hand and pulled me back. "Not yet, mama! Not yet!" I hear you, little girl. p.s. Annika has loved getting her mail! The address I gave below is still good, even though she's in the hospital. Plus, wow! Her good friend, Natalie with the Addictive Laugh, is being featured on Make a Child Smile this month!

the day before

Annika has discovered Nintendo. Lord help us all. I can already see Jörg getting out the car keys as soon as he reads these words. He's just been waiting for a child of his to be old enough to share the gaming passion, and thus to finally justify the purchase of an actual gaming system. I've got to give him credit: he hasn't played a game of Civilization or one of the approximately 326 Star Wars games in years, ever since our PC died and we decided it wasn't worth the money to replace it. What a patient guy. Annika's great joy is the new Donkey Kong game. In the new age of initials-only cool, he now goes by "DK," and he has a whole simian crew. Her favorite part is the very beginning, when the DK crew do their rap. She's been concentrating very hard to learn all the words. It's kind of a long rap, so this does sap quite a bit of her mental energy. Then, once the actual game starts, she mostly turns the little monkey ("Diddy Kong") in circles maniacally. There's no real "strategy" in her strategy game, but I'm amazed at how much progress she's made with the game control in just this past day. If anyone has any suggestions about games that are more age-appropriate for her or systems that have better selections for kids, I'd be happy to hear them. Are those V-smile systems worthwhile? Annika's new preoccupation has left me with a little more luxurious time to get all introspective, and to notice how strange the shifts are from otherworldly isolation to immediate intimacy in the world of childhood illness. Having a child in the PICU leaves you with a distinct sense of disconnection from the rest of the world. Whenever you leave the unit, it's like finding yourself walking on some alien terrain. Cell phone conversations overheard, laughter in the elevator, horns honking on the street outside, they all come at you as just so much incomprehensible noise. I found myself one morning standing in a Starbucks in the Lincoln Park neighborhood of our hospital, one of the more chi-chi neighborhoods of Chicago, when it occurred to me that I hadn't showered in 2 days and had neither combed my hair nor brushed my teeth before heading out for my caffeine replacement for sleep. In short, I was a mess. I didn't fit in at all in the line of well-coiffed, well-dressed customers, and that felt just about right at that moment. As I stepped out of the Starbucks, I looked up on the roof of the hospital and saw the helicopter landing pad, its windsock stiffened and warning lights flashing. It just didn't seem possible that a helicopter could land there, on such a small space, much less a helicopter carrying my own little Annika a few days previous. The unreality of it all just leaves you with a feeling that you have somehow stepped out of the stream of life and can't quite figure out how to jump back in and swim with everyone else. Then, swish, back in again. We were discharged over to the Kohl's House for transplant patients here at CMH. Suddenly we were living in a house with 7 other families, each with our own bathroom at least, but sharing a single kitchen area. There's nothing like sharing a kitchen to force a kind of immediate intimacy between people. Most of the families are eager to chat, to share their experiences with someone who has a similar story. But even the ones who keep their conversations to their own family unit reveal so much in what they say, without thinking of the others surrounding them, as if they were still home in their own kitchens. So, for instance, on the evening of our wonderful Thanksgiving feast provided by a well-known Chicago chef, a grandmother and mother came for dinner. "What? There's no gravy?" asked the grandmother. "It's over there. On the stove." replied the mother. "You mean that lumpy stuff? How long has this been out, anyway?" And just like that, a relationship laid bare for all to see. And scenes like these: A father, shuffling around the kitchen, still hunching over a bit from the discomfort of having donated a portion of his liver to his son. He's making breakfast for himself and his son with the radio tuned to the station that is already playing Christmas songs all day. He is singing along. A mother up at 7a.m. on Thanksgiving morning, already cooking so that her large extended family can have a Thanksgiving together as usual, but this year at the Kohl's house. When I see her she is meticulously rinsing the leaves of some exotic looking plant. Two hours later she is still working on this dish, which apparently requires some 52 ingredients. Later that afternoon someone happens by the kitchen and asks her about the dish sitting on the counter. "Oh, it's something I made." (laughs cheerfully) "But nobody liked it. Help yourself!" A little girl about Annika's age comes into the kitchen. She's still wearing her warm, winter hat - a sure sign that she's lost her hair to chemo. Her mom comes into the kitchen a few minutes later. She's not wearing her hat anymore - revealing her head proudly shaved to match her daughter's. A father, mother, and grandmother enter the kitchen together. The mother prepares a plate for the grandmother, who stares ahead, waiting for her dinner. She does not prepare food for herself or the father. Not one of them speaks. The father puts his head down on the table, covering his face. The grandmother eats a few bites and pushes the plate away. The mother covers it with plastic, as if they will be back to eat it later. Two days later, it still sits in the center of the table. It's something like being too close, seeing these moments that are so revealing. But it's also those moments that pull you back into feeling a part of life again. And there's my super-fantastic little girl, too. The girl who, after I said "It's good to be free!" as I unhooked her from the I.V. pump she is tethered to for 18 hours of the day, replied, "It's great to be ME!" She does an awfully good job at making sure I don't go all sad sack. She's been having a grand time here at the Kohl's House. After the sorrow at saying good-bye to Sabrina on Thursday, she discovered that one of the transplant recipients here has a little sister, who spent the weekend. Anni trailed after her in a manner that L, the sister, found most flattering. We came downstairs for breakfast on Sunday morning and found that L. had made herself a to-do list on the whiteboard in the playroom. It read:
  1. come downstairs
  2. play a video game
  3. have breakfast
  4. play another video game
  5. play with Annika
  6. have lunch
  7. play with Annika again
  8. go home for school
Annika had me read that list to her several dozen times, always wiggling with happiness every time I recited "play with Annika." That day, Sunday, L and Annika played several rounds of 2-player Donkey Kong (the main object of which was for L to find Annika, who was constantly getting lost). Then we all 3 played "Go Fish" for an hour, after which we searched, unsuccessfully, all over the playroom for the missing pieces to the checkers set. After Anni was done with her I.V. infusion for the day, we decided to go together to the Lincoln Park Zoo. The girls cavorted happily in the cold rain, chasing after the sea lions in the underground viewing area and doing their best to communicate with the monkeys. Annika's favorite part, by far, was the mama gorilla and her baby, just born in July. The mama sat right up by the window, looking for all the world like she was showing off her adorable offspring, who clambered over her head, down her back, around her waist and back up again, using her swollen nipples as handholds, earning a little swat from his mama. Annika giggled, the sound muffled by the face mask I made her wear to ward off any ill-timed respiratory infections, since there was a bit of a crowd around the window. When they finally got too cold from the gray rain spitting down on us, we grabbed some hot chocolate and headed back to the Kohl's House. After dinner the girls and I made a pumpkin pie together. The pumpkin pie (scraped off its crust) was the only traditional Thanksgiving food Annika got this year. However, the pie that Randy from Nacional 27 made for the dinner here at Kohl's was obviously made from fresh pumpkin. He probably also grated his own ginger and milled his own cloves and didn't let a can anywhere near his workstation. His pies disappeared in record time, though, and so I told the disappointed Anni that we would make our own pie. The girls had a great time glopping all the stuff into the bowl together and getting sticky from the eggs. But when it was finally time to eat it, Anni took one bite and pulled a disgusted face. "This isn't like the pumpkin pie from the restaurant!" Of course. The girl who finds Trix yogurt the most delectable of delicacies has suddenly developed an epicurean palate. Nevertheless, as I tucked Annika into bed that night she told me, "That was fun!" "What was fun?" I asked her. "Everything! The whole day!" she grinned. On Monday we began talking about going in for surgery. She had lots of questions for me, and I know she is a little scared. I told her that she will probably have some new I.V.s, since they will need a lot for the surgery. She's OK with that, as long as they put them in when she is asleep, but she is adamant that she does not want one in her neck, which is usually where they put the central line, which they will surely need. So I hope that they will be able to remove that one before she comes fully off sedation, or there is going to be one pissed off little girl in the PICU. She has invented an imaginary friend, named Esmerelda, who she tells me is also going in for surgery on Wednesday. "She's going to be going in with me, and she doesn't want an I.V. in her neck, either, 'kay?" We took another trip to the zoo on Monday, as the weather was lovely. The place was nearly deserted, and Annika got to visit the baby gorilla again, this time without the mask. We walked home with Annika in the fancy-dancy stroller that the Kohl's house staff let us borrow. It's that kind of Gwyneth Paltrow stroller, with the big, fat rubber wheels and a system of shocks that's probably better than the one on our Ford. Annika pulled her stocking cap down to cover her face and then settled back to go to sleep as she floated home on her luxury wheels. That evening as we were finishing dinner, a mom with her baby came into the kitchen. Annika was delighted, especially when she heard that this baby had had a liver transplant, just like her. "Ooooo!" she squealed, "He's just like the baby gorilla!" The mom looked a bit stunned. I'm pretty sure that most moms wouldn't be that overjoyed to have their babies compared so closely to a gorilla, but this baby happens to be on cyclosporin for his immunosuppression, the main side effect of which is wild hair overgrowth. Hair grows all over the head, often down the back, and even on the face, including a unibrow. Add to this that liver disease babies never have the usual baby shape. Instead they have a hugely distended belly and itty-bitty scrawny arms and legs from the malnutrition that results from a diseased liver. I wanted to reassure her that Annika loved the baby gorilla and surely meant her comment kindly. I wanted to reassure her that Annika had once had the exact same features, and we thought her a most beautiful baby. And that the hair growth usually decreases after a year or so on cyclosporin. And mostly that her child was just plain adorable. For simplicity, we just settled on the last observation, and Annika led the kitchen in a round of glowing praise for the cuteness of the baby, who, after all, is darned cute. So, Annika is being readmitted to the hospital at 3 this afternoon to begin the process of prepping her for surgery tomorrow. I wish I weren't so nervous, that I hadn't spent this morning's shower chanting "It will be OK, it will be OK, it will be OK..." quietly to myself while Annika happily played with her Ariel doll in her medical-supply-box-princess-castle just outside the door. Tomorrow is It, The Big Day. Let's hope it works. Deep breath.

Saturday, November 26, 2005

Frankie update

I actually wrote the post below yesterday, but I had some problems getting internetted yesterday. So I should also mention that Frankie is now keeping down food and was having so much fun playing when I called this morning that she couldn't be bothered coming over to breathe a few "Hi, mommy!" 's into the phone. Sigh. Last night we got a huge box of supplies for Annika's PICC line delivered (syringes, flushes, bags of TPN, dressing change kits, etc.) When Anni heard that she had a box of stuff downstairs, she got very excited. But, oh, the disappointment when we opened it and she saw such boring stuff. Upon closer inspection, though, she decided that the empty box bore a striking resemblance to a princess castle. She put a pillow inside and installed herself under a blanket tent with all her stuff. She's a real "lemons to lemonade" kind of girl. This morning she received some decidedly more pleasing mail (thanks, Catherine and Marisa), and boy was she pleased.

Friday, November 25, 2005

It's thanksgiving, and it's all about ice cream

I planned on writing an optimistic, generally thankful entry yesterday on the occasion of, well, you know, Thanksgiving. Of course I had planned a few wry asides concerning Thanksgiving dinner on Annika's liquid diet to keep it from descending into sappiness. But I just didn't have it in me. You know how in fairy tales people's hair is always turning gray after a particularly horrifying experience It turns out that this does really happen. I remember coming home after Annika's two transplants and our 10 months in the hospital riding the medical roller-coaster. I ran straight to my local drugstore and bought haircolor, for the first time checking the label to read about gray coverage. At the time I thought maybe it was just coincidence. After all, I was entering my 30's, and a few stray grays were to be expected, right? But our first morning here at the Kohl's House, where we were discharged Wednesday evening, I looked in the mirror and damned if the front of my head was not overrun with 40 or so new gray hairs. (I can't report on the gray incursion on the back of my head as I always forget to bring a little mirror so that I can see what's going on back there on the other side.) Later that day I met another mom down in the Kohl's kitchen. Her 4-year-old son is here for a bone marrow/stem cell transplant to fight a very aggressive form of cancer. She told me that I looked incredibly familiar, which happens to me a lot because I have sort of regular, everywoman features. I told her that I was surprised she could recognize me, what with all the gray going on all of a sudden. "I know!" she exclaimed, nodding her very blonde head, "I went to get my hair colored a few weeks ago and the colorist was all like, 'Wow! You have really gone gray!' and I told him, 'Yeah, thanks, I'm already here, you don't have to convince me I need it! And, anyway, you'd be gray, too, buddy, in my shoes.' " Still I was looking forward to Thanksgiving. We were out of the hospital at least, even if not actually at home. And, although our sole food supplies consisted of about 115 tea bags, 4 mini-bags of popcorn, and 8 yogurts and puddings for Anni, the chef/owner of Nacional 27 was bringing in food for Thanksgiving (yummy!). Annika was pleased with the amount of ice cream she was suddenly allowed to eat at all hours of the day. Plus, the neighbor girl, Sabrina, and her mom were coming up on the train for a visit. Annika was incredibly excited at the prospect of seeing Sabrina again, since she engages in a serious form of hero-worship at Sabrina's feet. She is a worldly 7, nearly 8, years old. A few months ago I fell in love with another house. It was a 1920's stucco with arched windows and a red-tiled roof. It was within easy walking distance to Jörg's university and the shady bike trail that snakes through town. There was a lovely little park just down the street, with a gazebo and huge, old oak trees to picnic under. But I knew that moving was out of the question, as Annika's heart would be broken if we didn't live next door to Sabrina. Sabrina is awfully fond of Annika and Frankie, too. One evening the girls were sitting around the table together enjoying an afternoon snack of all "C" foods (we're all about themes at our house). Sabrina looked around the table happily and declared, "It's just like we're all sisters!" I really appreciate Sabrina's mom, Robyn, letting her daughter develop such a close relationship with Annika. When we returned from our nightmarish first bleed in Dallas, Sabrina spotted us and the two girls ran at top speed to each other, arms outstretched. Add some swelling orchestral music and maybe some dandelion fluff floating in the air, and you'd have a fitting scene from any number of inspirational movies. Sabrina hugged her and said, "Annika, I'm so sorry that you were bleeding from, you know..." She paused to poke at her own belly, "your spleen and stuff." So there were some basic medical inaccuracies (she actually bled from her varices in her esophagus, but it is true that the increased pressure in the spleen is involved in the process), but I was amazed that Robyn and Sean had gone into so much detail with her. But I'm sure that Sabrina didn't stop asking questions until she understood the whole matter. Plus I imagine it helps for her to understand how serious Annika's issues are. A few weeks ago during our unseasonably warm fall weather Robyn (and most of our neighborhood) was overcome with something like spring cleaning fever. In delving into those dark corners of the little-used storage closets, she came across a box filled with birthday presents for Sabrina. They had moved into their house just after Sabrina's 6th birthday, and they had decided to leave some of the presents boxed up, rather than unwrapping them and then just having to box them up again right away for the move. Then, in all the excitement, the presents had been forgotten. When Robyn showed Sabrina the unearthed treasure, Sabrina decided that she would give those presents to Annika to keep her occupied during her upcoming hospital stay. So Sabrina arrived at the Kohl's house with her arms full of Polly Pocket dolls and those tiny princess dolls with the rubber clothes that Annika loves so much. She also had lots of stickers, stamps, and fancy paper for art projects on those days that Annika can't leave her bed. There was a little mini boom box with that tinny electronic dance music that grooves Anni's little soul, small enough to fit right there in the bed with her. Annika's eyes were wide as Sabrina pulled out box after box. "And now every time you play with this stuff, you can remember me! And that I love you!" "Cool," replied the overwhelmed Annika, at a rare loss for words. No mere architectural beauty in an awesome location could ever lure us away from neighbors like that. Obviously, we had a lot to be thankful for yesterday. I was excited, too, because I was going to head home in the afternoon to see my little Frankie, returning Friday night or Saturday morning while Jörg stayed here with Annika. Then my mom called in the morning to say that Frankie was throwing up and was clearly not feeling well. "I'll leave early, then!" I said, full of concern for my baby girl. When I hung up, Jörg said, "Of course you're not going! What? You're going to go home and get exposed to some nasty G.I. bug and then bring it back to Annika at the worst possible time? I'll go. You know I have to be back home to teach Monday, anyway." And just like that the day went to crap. I wanted to be there to hold her after she threw up, to press cool washcloths to her forehead, and murmur comfort in her ear. Of course, Annika needs me here, too. But sick is sick is sick, and I felt bad that I couldn't even make it to Frankie when she was hurting. I knew that Frankie's little bug was unlikely to turn my hair gray with worry, but that didn't lessen that ache in my chest. And, of course, Jörg is good at giving those hugs and snuggles murmuring comforting words, too. But, still. That night I pulled Anni's bag of I.V. nutrition out of our mini-fridge in the room. I mixed the lipids and the H.A. portion, filled the syringes with the supplements that are injected into the bag, strung the line through the pump, prepared and flushed her line before hooking her up for the night. It all felt awfully familiar, but I knew I had to pay careful attention throughout the complicated process. You don't want to make mistakes when you're getting ready to pump the stuff straight into her veins, through a line that dangles somewhere near her little heart. It didn't help my mood much, I can tell you. A few hours later we were both asleep. In the middle of the night, I heard noises coming from Annika's bed. Instantly awake, I sat up ready to fix a problem with the pump or deal with some new problem. Instead, I realized the sound I heard was giggling. Annika was laughing in her sleep. Sighing, I closed my eyes again. Thankful, after all.

Tuesday, November 22, 2005

better news

Annika's bleeding appears to have stopped. At least, there's been no blood in her stool since 6 pm yesterday evening. So the doctors have stopped the octreotide (the medicine that stops the bleeding), and have let her begin to drink again. Plus, there's been ice cream. Plenty of ice cream. It turns out that she won't have to be NPO (nothing by mouth) until after her surgery after all. She'll be able to have a liquid diet until the day before her surgery, when she'll go back to nothing in preparation for the anesthesia. We are preparing to move out of the PICU and up to the regular floor for the night. If there's still no sign of bleeding by tomorrow afternoon, we'll head for the Kohl's House across the street from the hospital to wait for her surgery. Although she will be getting her IV nutrition through her new PICC line 24 hours a day, she should be able to get out and take walks, and maybe even go over to the zoo down the street (OK, maybe I need to double-check with the doctors about that one). In any case, it should be a vast improvement in her quality of life, even with no thanksgiving turkey. I also hope that we might be able to bring Frankie and my mom up for a visit. If not, I will probably take the train down to visit them while Jörg stays with Annika. Frankie sounds like she is doing very well with my mother, but I still miss her. I've gotten a couple of requests for an address to send cards. Annika would love that. Like most 5-year-olds, she is a mail junkie. I think the best thing would be to send them to the Kohl's House. Here's the address: Annika Tiede Kohl's House 2422 N. Orchard Chicago, Illinois 60614 OK, back downstairs. Jörg is home grading papers, and although there is a volunteer staying with Annika in the room, she gets a little nervous if we're gone too long.

Monday, November 21, 2005

hunger artist

This morning found me washing blood out of Annika's new favorite blanket, a princess quilt from the ER nurses back home. Last night she stooled blood all over everything in her bed, but, completely exhausted, slept through it all. Even when 2 nurses and I changed her bedding right out from underneath her. The story today is that on Wednesday, when she was scoped and sclerosed for the bleed she had on Monday, they discovered a varix that they could not sclerose because it was too near the sphincter. They are pretty sure that this is the source of the new bleeding. I have no idea why I wasn't told about this rogue varix on Wednesday, after the scope. Maybe they didn't want to worry me? Maybe they thought it was too small to be a real problem? Whatever the reason, I wish that we had been told about it so that we could have been mentally prepared for the possibility of a re-bleed so soon. When you're trying to keep it all together in a crappy situation, preparation is key. Today Annika is going to have a PICC line placed (A PICC line is a semi-permanent I.V. That way, Annika's tired veins won't be subjected to repeated I.V. placement - regular I.V.s just last a few days - and they can also draw blood from a PICC line. Handy when you're on an every 6 hours lab schedule.) They will also begin her on TPN, which is I.V. nutrition. They are starting TPN because... (here it comes) Annika will not be able to eat or drink anything until well after her surgery on Nov. 30th. Holy Crap. The thinking is that eating or drinking anything might increase the bleeding, and they are not able to sclerose the little beauty that is evidently doing the damage right now. Let me just say, Holy Crap. It's already been 48 hours since she's been allowed to eat or drink, and she has been asking at least once every hour about the food situation. She has also been making a list of the foods that she would be interested in trying, if only they would let her eat (including pumpkin cream pie, fresh ginger, dumplings, and turkey). Last night she got a dreamy smile and told me, "I'm imagining ice cream!" Of course, given the Thanksgiving holiday fast approaching, all the "special episodes" on Nick and Disney have been featuring all sorts of food. Great! I seem to remember reading sometime, though, that after a certain number of days you don't feel the urge to eat anymore. Here's hoping. I'm also hoping that they might at least let her indulge in the occasional clear liquid, although right now the list of clear liquids that she's interested in begins and ends with "water." Maybe jell-o will be looking a bit more attractive to her in a few days. If the bleeding stops finally, they will let us leave the PICU and go across the street to the Kohl's House to wait for surgery next week. I do remember, though, that the families at the Kohl's house cook a big meal for Thanksgiving, and the smell permeates the entire house. At least in the PICU she doesn't have to smell the food that she's not allowed to eat. Anyway. Enough whining from me. Annika is doing impressively little whining herself, so I'll try to follow her lead. In the end the blood did not wash out of the quilt. She still thinks it's wonderful, though, and softer from the washing, to boot.

Sunday, November 20, 2005

back off the freakin' train

If I were a superstitious woman, I would say that I never should have accepted that invitation to today's birthday party for a preschool friend of Annika's. Anni has never been to a birthday party, outside of her own celebrations. First off, she doesn't get so very many invitations (I choose to believe that this is due to her lack of participation in many of the traditional preschool networking events, rather than some personality flaw). Then, what attempts we have made to let her experience the other side of birthday partying have always been thwarted by illness. So what in the world was I doing jinxing our homecoming by RSVP'ing to little Lauren's birthday party? So Annika is now in our least favorite place in the whole entire world, the PICU. CMH in Chicago sent a helicopter to transport her last night. At first she was really excited about the prospect of flying to the hospital. But when she realized that neither Jörg nor I could accompany her, she decided that it was actually a pretty crappy idea. When the nurse came in she told her, "I am not taking a helicopter to the faraway hospital. I am not taking an ambulance. I am not taking a train or a car or a bicycle. I will walk. By myself." Still, when the helicopter arrived, she grudgingly decided that the transport nurse was actually pretty OK, and she went willingly into the chopper, all bundled up and strapped in. Jörg and I ran to our car and drove to the hospital, thankful we had our cell phone. Just in case. We had never before been separated from Annika like that. About an hour into the trip, I took the cell out just to make sure we hadn't missed any calls. It was dead. Of course. So we arrived in record time, even though we had to dodge all the drunk and happy people stumbling out of the bars on Lincoln, which was clogged 2 layers deep with taxis waiting to ferry them safely home. Of course we did not begrudge them their blissfully daring joie de vivre, but it is nevertheless slightly irritating when you are trying to reach your child alone in a PICU room, carrying only a useless cell phone that has left you completely ignorant of her condition. As of this morning the word is that she will remain in the PICU until they are more certain of her status. She has, again, had a significant loss of blood. But her heart rate and blood pressure have reassured us that her body is dealing once again with the insult. She is again on the octreotide, which did a very good job of stopping the bleeding last time. Again, though, she is not allowed to eat or drink anything at all as long as she is on this medicine. So, in summary, this sucks. But it could suck a whole lot more. (Oh, and Frankie is great. She's at home with my mother, who let her sleep in her bed with her last night. However, Frankie is clearly a bit irritated with us for taking off again so soon. So she has clearly been learning from Annika's feisty example. Good for her.)

Saturday, November 19, 2005

shit, redux

Annika is bleeding again. Again, she's at the ER with daddy while I'm home packing to go back to Chicago. This is NOT supposed to be happening. We were supposed to have a 2-week window of no-bleed safety. Sweet Annika, my wondrous, dimpled little hellion, you are scaring the bejeezus out of us, what little bejeezus we had left, anyway.

edited from the Hallmark Movie of the Week

I admit I often fall prey to the sentimentalization of childhood that is the prime annoyance for those who complain about parenting blogs. But I do also try to tell the truth. After all, I think of these entries as a record for my girls, a gift for their adult years, and it would certainly be a disservice to them to pretend like raising children is a shimmery, unicorn and rainbow-filled experience. Plus, I know that the stories of my misbehavior as a child ("Oh, gross! Don't eat that!") are probably more entertaining than the stories of how I won the Mathletics in 6th grade. So here is a hard truth about raising a child who spends long stretches of her life in the hospital: they come home acting like Misbegotten Hellions placed here on earth to test the limits of human endurance. The Hellion usually begins rearing her tiny, horned head during some particularly onerous procedure. So Annika, all red-faced and bulgy-eyed with snot dripping from her nose like the goo that always precedes the appearance of the Alien before she devours some unsuspecting space explorer, will begin growling through clenched teeth, "I rule the world! I am going to destroy you! I am going to DESTROY EVERYBODY!" I glance nervously around the room at the various medical professionals assembled there, "Isn't that cute? She's going through her Evil Despot phase!" (For those of you who have been reading for a while, you will note that her Killer Bumblebee persona has evolved considerably.) There are certain well-known approaches for raising children that are Socially Potty Trained and eligible for trips into the public eye (and, in particular, to Taste of Heaven Bakery in Chicago): judicious use of time-outs, loss of privileges, and natural consequences ("OK, we're leaving the store. Those croissants you wanted in the shopping cart are not worth injuring the eardrums of my friends and neighbors here at the local grocery.") And, of course, if you want a well-behaved child, I don't recommend giving them steroids. But the steroids have been a fact of life for these past 4 years, and you just try any of those approaches above with your child in the hospital. "OK, young lady! No more I.V.'s for you! And you can just forget about that blood draw tonight." And time-outs? At home we put Annika into her room for a time-out. There aren't any toys in her bedroom, but there are always books (none of them featuring any Super Villains, thank you very much), and it's generally a quiet place for her to rein in her emotions. Jörg recently commented to me that my amazing redecoration of the girls' room means that it's not a very good place for time-outs any more. "It's just not the bleak environment that we need for getting the message across, is it?" To which I assured him that the time-out wasn't really about jail time so much as allowing her some quiet space to regain control (and perhaps getting across the point that threatening to wipe out all of humanity in a demonic voice is likely to lead to a certain amount of social isolation). Time-outs are wonderfully effective with Annika, who thrives on social contact. They are less so with Frankie, who has just hit the age (2) when time-outs can begin to be used. Frankie, who is much quieter than Annika and has spent her entire life with a big sister bearing down upon her in the oversized version of love that Annika favors, recently requested "More Time-Out, Peez!" when I came to pick her up from the playpen, where she had just spent two quiet minutes as a result of refusing to get off the table when we were trying to eat lunch together. But the key to a good time-out is having a safe place to leave the child alone. I can think of no place less safe to leave a child with Annika's sense of daring than a hospital room. There are I.V. pumps with all sorts of alluring lights and buttons just begging to be pushed. There are more electrical outlets in that one room than in your typical 2,000 square ft home. And they're painted red, for added allure! There are I.V.'s in arms, that she would really rather pull out than have to deal with anymore. If you look in the corners and under the beds, you are likely to find some sort of medical implement that escaped notice during the recent I.V. placement. There's the computer screen, monitoring her heart and respiratory rate, with a handy touch-sensitive screen. Surely that's not too hard to break! And the chest of three drawers is placed handily underneath the monitor for easy climb access. There are buttons to push to move the bed up and down, with all sorts of moving parts just right for pinching fingers or catching and destroying I.V. tubing. So leaving her alone there when she's in the midst of one of her rages? I might as well drop her off at the Museum of Sharpened Knives and Loaded Weaponry. And loss of privileges? Well, the only real option would be to take away the T.V. We have used this to great effect at home (in fact, it's so effective that it leaves me a bit worried. I wish I could be one of those "no T.V. in this house" parents. But I don't know a single parent of a frequent-hospital-flier child who leads a T.V.-free existence.) But at the hospital? I can just see myself: "OK, Annika. That's no T.V. for the rest of the day. And since they had to put the I.V. in your left hand, we can't really draw or dress your paper dolls, can we? And mommy's voice is still hoarse from the 26 books we read last night before you would go to sleep. How about we play our 43rd game of Go Fish! Or we can just sit here on your bed together and play 'Guess Why the Baby Next Door is Crying!' " So, yes, when Jörg told Annika, "No kicking!" last night when her feet strayed dangerously close to her sister, she replied, "Blah, blah, blah." She went straight to time-out. And then she came out of her room, happy to be home, evidently happy to be back to a place where the rules are known and snappy comebacks are met with the expected consequences. But those adorable dimples on full display when she comes out aren't fooling anybody. We'll see the little despot again soon, I'm sure. One of the, shall we say, less inspirational facets of life around here.

Friday, November 18, 2005

Back on the train, part II

Home again. Deep sigh. Once it was clear that Annika could handle solid food, we skedaddled out of there. We rode Amtrak home together (I rode in the ambulance with her up to Chicago, so no car available). Annika was thrilled with Union Station and being surrounded by trains idling their impressively growly engines. It's shocking how quickly things go from Pure Terror to Okey-Dokey. Jörg and I were both scared out of our wits on Monday evening. And it was clear that her docs in Chicago were worried, too. They sent an ambulance with 3 transport nurses from Children's, after first checking into a helicopter (grounded because of weather). As the nurses reported back to the hospital on our way up I-55, I realized that they had a PICU room ready for Annika, should she need it. When we got on the elevator at Children's and the nurse pushed the button for 6, the regular transplant floor, not the PICU floor, I breathed a sigh of relief. So we're home for 11 days before returning for her shunt surgery. The sclerosing on Wednesday should hold her safe from any bleeds until the surgeon can finally get in there and try to fix the problem. I will try to finish up all the little odds and ends I have sitting on my computer desktop, like the story of Frankie's first E.R. visit (the day before Anni's bleed) and the ongoing transformation of the girls' room. Meanwhile, I recommend reading the inaugural issue of The Whole Mom (well done, Andrea!), for which I contributed a short piece on organ donation and television.

Thursday, November 17, 2005

Hurricane Annika

Annika is pissed. Seriously. Her wrath is scary, but also beautiful, like watching a hurricane on satellite or a volcano erupting. I know that she is only making things harder on herself with her rages, but on the other hand I feel like high-fiving her, "You go, girl! Don't take crap from anyone without fighting back!" I had been telling her that we wouldn't have to go back to the hospital until after Thanksgiving, but here we are anyway. At first she kept asking me in a confused tone, "Did we have Thanksgiving already?" But as soon as it sunk in that this was an unscheduled visit, she's been hmmmppphh'ing around with her arms crossed over her chest, the very picture of irritation and disapproval. Then there's the fact that lunch today will be the first solid food she's been allowed to eat since Monday at lunch (when she had all of two ears of corn). She wasn't allowed to eat or drink anything at all for 54 hours. Finally, last night she got to progress to liquids. She had 3 cups of ice cream for dinner last night. Not bad, but not all she was hoping for.   And then she's on her third I.V. This third one is in her left hand, which makes most activities difficult as she is wholeheartedly left-handed. And the blood draws have been every 12 hours, and since she had two I.V.s in her favorite blood draw veins (the beloved antecubitals on the inside of her elbow), she's had to have the blood drawn from her hands, which she hates. Yesterday she had reached the point of such anger that she wouldn't even let the nurse flush her I.V. with saline to make sure it was still working before she went back for the scope and sclerosing.   It's strange to see the mixture of maturity and babyhood she shows right now, like she's struggling with whether it's better to be a grown-up or regress back to infancy in this stressful situation. When the phlebotomist shows up to draw her blood, she is almost always quite calm and matter-of-fact. This tends to lull the phlebotomist into thinking that she has hit upon a dream patient. But then Annika holds out her elbow, turned up, to indicate where she wants the needle to go. When the phlebotomist reasonably explains that those veins are being used for I.V.s already, that's when all hell breaks loose. She curls into a ball; she uses her shockingly strong legs to kick out at anyone approaching her like a porcupine shooting quills at a predator; she stuffs her arms under the material of the polyester puppy pajamas the hospital provides; she screams, "Get away! Get away! Get away! Get away! Don't touch me!" in a voice loud enough to let me know that the "Stranger Danger" talks have gotten through, even if she's misappropriating slightly. So we try to calm her down. I stroke her back and all the needles and tubes on the bedside table are wheeled safely away from her. We explain the situation in calm voices. We try to get her to talk out her feelings. We offer to let her "draw blood" on Furby. When we ask her why she is so scared about having her blood drawn someplace else, since she is so completely OK with blood draws in her antecubitals, she explains that "It is just too dangerous!" The problem seems to be that she has developed into a creature of extreme superstition. For everything to go smoothly, they have to go into her Lucky Veins. She has developed a long inner list of the rules that must be followed for a successful hospital stay, and flexibility is not an option. Of course, it doesn't help when we get a phlebotomist who needs to have a short course in "What NOT to Say to a Freaked-Out Child in the Hospital." This one rolled in with her loud voice and unexpectedly quick moves. When Annika began fighting, she threatened her with, "I'm going to have go bring in the nurses. They will hold you down and I will send your mommy out of the room. That will be really scary." I probably should have just sent her away right then and there and asked for someone else, but I just let it go. I did, however, lean down and whisper in Anni's ear, "I'm not leaving you, Annika. No matter what." After a few more minutes of struggling, the phlebotomist got completely exasperated and declared, "Annika! Come on! This isn't going to hurt!" At this I finally turned on her: "You're not being very helpful. Don't tell her it's not going to hurt, when it very likely will! It's a needle, going into her skin, in the sensitive hand area. If you tell her it's not going to hurt when she very well knows it will, don't go acting all shocked when she doesn't trust a single word you say! Geez!" This is the first time we have ever gotten someone who clearly didn't know how to talk to kids, though. To her credit, she stepped back after I lost my temper with her, and just kept quiet while I tried to work Annika back down out of her full-blown panic. Then she did a great job getting the vein quickly. If I thought the blood draws were dramatic and stressful, it was nothing compared to the whirlwind of rage that exploded when I took her back to the OR room where the doctors tried to put her under. As she was finally going down (after needing way more sedation than they thought she'd need), I kissed her sweaty brow, told her I loved her, and lay her down on the table. Dr. Emerick, the GI who was going to do the scope and sclerosing, walked me out of the room. My arms were shaking a bit from the effort of trying to restrain her. "She fights soooo hard," I said, almost apologetically. "That's why she's still with us," replied Dr. Emerick. Now normally, I don't much go for these types of platitudes, "She'll get through this! She's a fighter!" So, what? Those who don't make it didn't fight hard enough? Gave up? I don't think so. Sometimes these kids are just handed more than any little body can handle. But this time, I took Dr. Emerick's words and held them tight as I headed out to the waiting room. Any port in a storm, as they say. The scoping revealed that she had developed one new varix since the last sclerosing, and that was the most likely source of this new bleed. The fact that there was only one new one was good news. However, it was another huge bastard, grade 4 (the scale is 1-4, with 4 being the worst). It could certainly have been much worse, lots of them rather than just one, or she could have developed varices in her stomach, where you can't sclerose them. On the other hand, sclerosing varices usually gives you a 2-week window of safety (no bleeds likely), which is why Annika had been on a schedule of sclerosing every 2-3 weeks up until this point. Since she was scheduled for the shunt surgery on the 30th of this month, the doctors decided to give her poor little throat a break. Thus it's been 4 weeks since her last session of sclerosing. Just 4 weeks, and she was bleeding again. If there was any lingering doubt in my mind that maybe we could avoid this shunt surgery a bit longer, this certainly proves otherwise.

Tuesday, November 15, 2005

thank god for student nurses

The student nurses are swarming the floor up here in dark Chicago. Annika loves her student nurses. They're young and chipper and love her music (and her knock-knock jokes). Plus, she loves that she gets to have me out of the room and just hang. You know, kick back with the girls. So the docs in Chicago had her started on an I.V. medicine that pretty much stops the bleeding almost immediately, although she was still losing blood as of 7:30 this morning. She has to remain on this continuously until they go back in with a scope in the OR tomorrow morning. Meanwhile, she is confined to her bed so that her heartrate can be constantly monitored. If you know Annika at all (and it's not like I ever write about her, right?), you know that that kind of confinement gets really old, really fast. Also, they had to start a second I.V. on her this morning to have another access in case they need to start a rapid blood transfusion. The word so far is that they are planning on sclerosing her tomorrow morning, and plan to leave the surgery at its scheduled date. There was some talk of moving it up, given this new round of bleeding, but it seems that is not going to happen. I still don't know exactly why, and noone has come by to explain the plan to me, which leaves me fairly pissed. I also do not know if they are planning on letting her go home after the sclerosing or keeping us here until the surgery. Another question that you'd think someone might think of answering for me. On the other hand, I suppose that they won't be able to give us a lot of information until they get in there tomorrow morning with their itsy-bitsy futuristic cameras and check out what is actually going on. Thanks for your kind words and thoughts, again.

Monday, November 14, 2005

shit

Annika is having another bleed. She's in the ER here in town right now. I'm home packing a few things before we ambulance up to Chicago.

Monday, November 07, 2005

nesting

In one week I have:
  1. Planned, prepared, and executed a late, joint birthday party for the girls.
  2. Shopped for and planted 2 big mums, 6 small junipers (Only $8 each! Fall clearance time rocks!), and 1 large-ish maple (Only $25! And it's as tall as I am! Woohoo!)
  3. Painted the girls' bedroom blue (top 2/3) and green (bottom 1/3) - Annika selected the colors (and I am so proud of her for deciding against pink) because she wanted her bedroom to be an "outdoor place." So, the blue is supposed to be the sky, etc.
  4. Created a new reading nook in the girls' room, complete with egg chairs and a butterfly-festooned canopy.
  5. Drove with the girls to Rockford for an overnight visit of fun!fun!fun! with the Martins
  6. Been bitten for the first time (Frankie decided that a half-chewed carrot just had to stay in her mouth, even though she was half-asleep, and never mind the choking hazard thank you very much.)
  7. Helped one child wipe her bottom in a gas station toilet while simultaneously holding the other child asleep on my shoulder (nice timing, Anni!)
  8. Had near heart-attack when Annika started crying and spit out suspicious looking black bits out of her mouth. For those not in the medical know, vomiting that includes specks that look like coffee grounds can be a sign of a variceal bleed (that's what Annika had in Dallas). Luckily, quick-thinking Jennifer (of Martin Girls fame) figured out that she was spitting out the granules of Quik that had not dissolved in her milk. After observing my hair turn gray before her eyes, Jennifer has decided not to serve any more Quik to Annika.
  9. Replanted evergreens blown out of the ground by this weekend's huge storm. (Have you ever seen the Lillian Gish movie The Wind? I think I must have seen the original dark ending version at my sister and brother-in-law's house because I remember her going crazy in the end. And I totally get it. It's like living in a wind tunnel here.)
Here we are, just 3 weeks away from Annika's Big Surgery. I've got all sorts of nervous energy moving my limbs this way and that with various projects and meanwhile it seems my mind is shutting down. At least, sentences aren't forming the way they should for me. This feeling reminds me of the whole nesting thing before giving birth. There is anticipation, of course, great and lovely anticipation, but also a sort of dread at facing the unknown and wondering if you'll be up to it. There's the same sort of mixture for me now. And the feeling that if only my linen closet were better organized then I would surely be ready. Thus, the home improvement projects. But of course we are still having fun. "How much?" you ask. Well, about this much (movie, 5.8MB)