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, September 28, 2005

She's O-kaaaaaaaaaay!

Yankee Transplant (a.k.a. she who, along with Joe, gives me hope that the dreaded teen years may be survivable) asked in the comments about Frankie's reaction to our last hospitalization, which was missing in my summary of the trip. I'm pretty sure that this oversight was due to the fact that it was (mostly) a non-issue. First of all, and most importantly, she got to stay at home, and I'm pretty sure that she understands much better that we will be returning to her when she is in her own familiar location, rather than staying at someone else's house. Secondly, this trip was much shorter. Thirdly, we left in much better spirits this time. In Dallas, the last Frankie saw of Annika was her big sister going ballistic because they had just told her that the I.V. needed to go in immediately and they didn't have enough time to wait for her beloved EMLA cream to take effect (a numbing cream that Annika loves as much for its psychological effects as its physiological ones). And I'm sure Frankie could not have missed noticing how very upset and stressed I was. This time our departure was much more relaxed. It all added up to a more peaceful separation for Frankie. My mom came up on the train and stayed with her while Jörg was at work. She is pretty much the epitome of everything good and warm that the word "grandmother" evinces, so Frankie was delighted. She is the kind of grandma who will sit on a stool in the bathroom and read The Princess and the Potty 12 times in a row while the poopy newbie sits contentedly on her Elmo and Cookie Monster potty chair, waiting for the spirit to move her. Or not. She is the kind of grandma who gamely allows her granddaughter to use her styling accessories from her big sister's Belle Doll Head on Grandma's tender scalp. She is the kind of grandma who excitedly announces that Frankie counted to ten for her, while Frankie stands by proudly chanting some rhyming gibberish that might, in fact, have some connection to our Arabic numeral counting system. In other words, Frankie missed us, but she was feeling much more secure this time around. The girls are both in pretty wonderful moods right now. Annika is overjoyed that she has started preschool this week. Really, "overjoyed" is an understatement. She's wiggling, skipping, hopping, twirling, and singing her way from the car to the classroom happy to be back. After talking to the doctors, who feel that her chance of bleeding in the next few weeks has been greatly reduced by the last round of sclerosing, we decided to let her start preschool (3 weeks late, of course). It's only 2 hours, 3 days a week, but it's so exhilarating to her being off on her own. We're planning on pulling her back out one week before the Rex shunt is scheduled to avoid any accidental exposure to infection before such a major surgery. But in the meantime, we're living the motto, "Enjoy your wondrous life, little girl!" with her. As long as enjoying her wondrous life doesn't involve buying any more animatronic toys, that is. And while Annika enjoys the blissful independence of going to preschool, Frankie is practicing a certain take-charge attitude in her own life. After a particularly triumphant episode of pooping in the potty, she marched out of the bathroom swinging her arms like an enthusiastic drum major at the head of a parade (a poopy parade). She stomped her way into the kitchen, arms swinging high, and shouted at Jörg, "I made poop in the potty! I ike it!" "Wow," Jörg replied, "I like that, too!" A few minutes later Frankie was sitting at the table munching on a cheese stick. Given her enthusiasm concerning her own poop just moments ago, Jörg understandably expected some happy cheers when he looked over at her and said, "Frankie, I love you." Instead, he got nothing but silence as she chewed her cheese thoughtfully. Thinking that she had not heard him he repeated, "I love you, Frankie." The expectant silence dragged on, with Frankie still absorbed in her cheese. Dying to hear her adorably cute response, "I love you, too, Daddy" Jörg moved a bit closer to her and spoke a bit louder, "Frankie, I love you!" Finally she turned to him and stopped her chewing, "O-kaaaaaaaay." And then took another bite of cheese. Of course, I was having a good laugh at this, but then Jörg shot right back to her, "Who do you think you are? Han Solo?" which made me laugh even harder. We may be parents constantly obsessed with our children, but at least we can still make jokes purely for each other's benefit. He's a keeper.

Monday, September 26, 2005

0 for 3

We're back home again, and I am slowly emerging from my usual post-hospital funk to finally get an update written. Annika did not get her varices banded this time, but instead they were sclerosed. Essentially, they stuck a needle all around the varices in her esophagus (all 4, evidently the one that they banded last time had still not shrunk completely) and injected a chemical that irritates the tissue and causes the blood vessels to harden. It's a much more unpleasant procedure than banding, but, then, Friday was a crappy ass day all around. She was none too thrilled at the prospect of going downstairs from her hospital room to have them "look in her throat" (as we explained it) again. Her nurse for the day, Donna, and I did our best to reassure her. First, we told her that after the procedure she would be able to eat (she hadn't eaten or drunk anything since the night before). Donna made a big show of writing down her requests for food on a piece of paper so that it would be all ready for her. Then she got very nervous as we approached the holding area downstairs. "Look, Anni," I reassured her, "you already have an I.V. so they won't be giving you the mask this time." That was another welcome bit of news, as she fears going under with a mask almost as much as she hates nasogastric tubes. While waiting she said, "Mama, please tell them not to hurt me, OK?" And I quickly came back with, "Of course not. It's not going to hurt you. Remember last time? You just woke up and you had a funny feeling in your throat, but it didn't hurt, right?" "Right." But this time some on-the-ball anesthesiologist noticed that she had a sensitivity to latex listed as one of her precautions, and lo-and-behold the packaging of the banding material has an alert for possible latex (Possible? Not sure what that means. Isn't it either in there or not? Maybe the workers might have been wearing latex gloves? Who knows?) So they changed strategy and went with sclerosing instead. When Annika woke up from the anesthesia, she was in a rage. Her oxygen levels kept dropping to 80%, and so the recovery nurses kept trying to put an oxygen mask on her. Needless to say, this was ratcheting up the rage levels several notches (Remember my assurance "no mask"?). Her main GI doctor finally pointed out that she might be in quite a bit of pain, and suggested giving her some I.V. pain medicine (Remember my assurance "it won't hurt"?). The pain medicine helped immensely, and I finally convinced her that her My Little Pony was the one who needed the mask, and, by placing the pony right by her face, she was at least able to get the benefit of blow-by oxygen. When we finally got back upstairs to her room, Annika began asking about her promised post-procedure feast. Which was when Donna found out that the "no food or drink" edict was still in effect for 4 hours after the procedure, and then she could move only to clear liquids (water, in effect, since Annika has no use for broth, popsicles, or jello). Finally 4 hours later she could move to a soft diet. Which meant that all her requested foods were off the table until the following day, at least. Yup, I was 0 for 3. And don't think she didn't take note. Let's just say I was not the most popular person in the room for the next few hours. And the news just kept getting better. Dave, our transplant coordinator, stopped by to tell us that the sclerosing would need to be repeated at least one more time. Annika, irritated with a burning throat, was not happy to hear this. Of course, she also knows how to seize the moment. She tugged at my arm, "Mama, I think I am going to need a furby for that." Aaarrrrrggggghhhhhh. I am going to have to put my foot down to stop the onslaught of creepy animatronic playthings into our lives. It all started with this puppy, the original "freak your real-life cat out" friend. Then we moved on to this bear, and now we have Good Morning Sunshine Pony to add to the battery-powered armada of overwhelming cutesiness. Really, the conversations that Annika makes up with her toys are so much more interesting when they don't have a set of pre-programmed phrases to contribute. One recent conversation between two dolls, with Annika providing both sides of the exchange: "OK, it's time to go to the beautiful, magical, fantastic ball now." "No, you have to go to the far-away hospital because you are sick right now." "No. I am not sick. I am putting on my beautiful, magical, fantastic dress and I am going to the ball right now." "No. I am sorry, but you have to go to the far-away hospital. They are going to get a piece of liver out of your throat. Then, you can go to the beautiful, magical, fantastic ball." "OK, I will go. But I am really angry about this." It took me a few moments to realize that she was talking about her recent transjugular liver biopsy, in which they insert a needle into her jugular on the side of her neck and thread it down to her liver, where they take a sample for examination. So it's clear to me that one of the ways that Annika works through her feelings about all this is through pretend play, and it's best just to let her imagination go where it needs to go, rather than guiding it with a giggling and blinking and mainly saccharine toy. On the other hand, I also have the general feeling that she should just to get choose whatever she damn well pleases because this is a lot of crap for a little girl to go through. There was one super-wonderful bright spot during our stay: Ralph came to sing! Of course as luck would have it, Annika was in the mood I like to call "grumptastic," rather than the perhaps more accurate but completely understandable, "cranky as all hell." I think the anesthesia was still leaving her a bit groggy, and her throat was hurting. While waiting in her favorite playroom for Ralph to arrive, Annika fell asleep on my chest listening to me read aloud "Alice in Wonderland." Perfect for those drug-addled days in the hospital, I know. Sitting there with my feet up on the modern fainting couch that we love, with Anni snuggled under my arm and her head resting on my breasts, I could remember all too vividly those long days and nights spent with her tiny baby head resting right there on my breasts, now finally empty after years of use. I remembered that, despite all the drama of those days, at least I could always comfort her so easily just by nursing. And I just don't know what to offer her these days. It's so easy to work yourself into a funk in the hospital. Perhaps that's why they've worked so hard to include lots of windows for sunlight and lots of bright colors and the cleanest, most wonderful fish tanks you've ever seen all over the hospital. Last time we were admitted I was offered a relaxation massage no less than 3 times. So I guess they're fairly aware of the dangers of hospital depression, not just for the patients, but also the parents. I had talked to Dave, our transplant coordinator, the previous day. I told him that I was just a little freaked out by the fact that our surgeon clearly is not too happy about performing this surgery on Anni, even in the face of bleeding varices, which will, in all likelihood, kill her if not fixed (and fixed by something other than sclerosing, which is only a short-term solution, and one with its own undesirable side-effects, at that). I also said that I was trying to keep my balance by remembering that Dr. Superina is not exactly an upbeat guy even in the best of circumstances. I think I've seen him smile maybe once, and that was outside the confines of the hospital. So I know better than to expect enthusiasm from him, but still... I asked Dave if Dr. Superina had performed the Rex shunt in any other transplant patients besides the two I already knew about. No, he hadn't (and this is significant, because Dr. Superina is the acknowledged expert on this surgery in this country). And it turns out that the one successful shunt that he performed was actually on a patient who had received a whole liver, rather than a partial liver like Anni (and like his other patient little Jayli, whose shunt failed). This is important because sometimes, with a partial liver, there just isn't a place on the liver to hook up the shunt. With this conversation replaying in my head, and Annika resting on me peacefully as she hasn't done much since her baby days, I got a bit maudlin. Jörg and I are having the opposite reaction right now to the prospect of this surgery. Jörg, like a man with a gun pointed to his head, just wants to schedule it and get it done. I, on the other hand, am happy putting it off as long as possible. I keep thinking of things I don't want her to miss, that she might miss if this surgery is unsuccessful. Annika loves Halloween best of all holidays, and so we really should try to wait until after then. And, of course, we don't want to schedule it over Thanksgiving, because it can be hard to get things done with everyone off on vacation. And then, of course, Christmas is a great holiday. Annika loves decorating the tree, not to mention the stocking and the presents. Then we really should wait for the first really big snowstorm because Annika is a sledding fiend, and we found the greatest hill in town last winter. And then I remember how Catherine Newman wrote about how sad she was at the thought of her son starting kindergarten and getting his adult teeth in her journal, and I think to myself that it would be the most wonderful sight in the world to see Annika with a mouth full of teeth too big for her little face. And so on, and so on... Completely and totally unrealistic of me, I know. But then Ralph came in, toting his guitar. I roused Annika, who clung to my neck. I explained that she wasn't feeling great because "they had had to do some mean things to her yesterday" (at which point, I mentally slapped my forehead, "DOH! Don't say it like that! That's not the way to talk about it to her! Think, woman, think!" But you try figuring out how to talk about painful stuff being done to make you better, and see if you can figure out how to make it all make sense to a 4-year-old.) He started off with one of her favorites, and then asked for her requests, which she was too sleepy and grumptastic to say herself, but I knew which songs she loved the best, even if my mind was pulling a blank on the actual titles. Luckily, Ralph didn't mind if I just sputtered out a few "close enough" titles. When I offered up two and asked her which was her favorite, Ralph interjected, "How about both of them?" Annika shivered in delight. If we were making a movie of her life, she would have held out her arms at this point and sighed, "Ah, Ralph. You had me at 'both'!" At one point I started singing along, but Annika put her hand over my mouth, "Shhh. I'm listening to Ralph!" After the concert, Annika went into a panic because she had left Good Morning Sunshine Pony upstairs, and she just had to show her to Ralph. I sprinted up the stairs, and returned just in time for Annika to make her introductions. Ralph bantered cheerfully with the thing, practically falling to the floor in mock surprise when Annika "woke" the Pony up to do its talking/moving thing. As we were leaving the family room, I saw Annika clutch her throat again. Concerned that she was still in pain I asked her, "How are you feeling, Anni?" "Mama, I am feeling really happy!" she replied. Thanks, Ralph. You're better than a breast full of milk any day! As we were returning upstairs, I realized that I had completely forgotten to take a picture of Annika with Ralph. So we grabbed the elevator, pressed the button for the lobby, and then made a run for it. Annika was hilarious, shouting, "Wait, Ralph! Wait!" and running in her adorably awkward gait. We managed to catch him just as he was headed out the door*, and snapped two quick pictures. *We had caught up to Ralph and the Family Life manager by the elevators earlier and he joked, "Well! Look who's following me!" To which I replied, "Yes, she's working on her stalker skills." To which I received uncomfortable looks all around. When, oh when, will I realize that my sense of humor is not always actually that humorous? On the way back upstairs, Annika swished her skirt in cheerful satisfaction and asked, "When will Ralph come visit me again?" I tried to explain that this was a special visit, and we might not see Ralph for a while as he was very busy going to visit kids all over the country. "OK," she said, "But next time I want to give him a chocolate cake!" Annika's plan to lure Ralph back (movie) Our next round of sclerosing is scheduled for October 13-15, her birthday weekend. Jörg has noted that Bruce Springsteen is in town giving a concert on the 13th. Hmmmmmmmmm.

Thursday, September 22, 2005


We're leaving this afternoon for the next round of banding. Jörg finally heard from the surgeon, who said that Anni's CTA looks like she will be a candidate for a Rex shunt, but that he can't say for certain until he opens her up and has a look inside. He wants to wait on the surgery until after this last round of banding so that the varices are not quite so ripe and ready to bleed, so we'll talk scheduling after they have a look in her esophagus tomorrow. While Annika is in the hospital this time, there is a chance that Ralph Covert (of Ralph's World fame - there's even a message board for groupies!) will stop by to visit her and sing a few songs. Nothing's certain yet, but it's pretty great that he's even considering it. The man is on a tour of exhausting proportions right now. I've mentioned Ralph before, and Annika will be so very excited if she gets to see him. If you have kids and you're not listening to Ralph's World with them... OK, I don't know how to finish that conditional without using the word "poopyhead" (only a few hours sleep last night, thanks Frankie!), but Ralph is pretty great. Even without kids. Finally...Julia, if you stop by, here's the post I was telling you about. Thanks for the great haircuts!

Wednesday, September 21, 2005

and these are yours, little ones

The girls seemed happy and sufficiently occupied with their cupcake tops, so I dashed upstairs for a quick check of my email. (I wonder how many parenting horror stories have started with that first line. Maybe not the "cupcake tops" part, exactly, but something similar... I'm betting lots.) I returned downstairs not five minutes later and found Annika with the can of spray-on decorator icing firmly planted in her cheek pocket. She was deploying the valve with her eyes half-closed, lost in her own decadence. Meanwhile, Frankie sat beside her, joyfully shaking a bottle of pink sugar sprinkles onto her own head. And did I mention that it was time for Annika's prednisone? Holy sugar-mainlining hyperactive steroid exploding crap. I'm happy to report that my old friend, self-protective amnesia, is already on the job and I don't remember any of the specifics from that afternoon, but I can tell you that I felt a strong urge to curl myself into a teeny-tiny ball just writing the words above. Now about the "cupcake tops" bit... A few days ago Anni decide that she haaaaaaad to have cupcakes, that her very happiness for the rest of her life depended upon having chocolate cupcakes. Now. So, having quit my job and having told the preschool that Annika can't return until her bleeding issues are under control and having put Frankie down for one of her marathon naps that prevent her from going to sleep before 10:30 because she cannot stand to sleep because she obviously is having some abandonment issues...well, Anni and I had nothing but time on our hands to make some chocolate cupcakes. We had fun making them together, and I am awfully impressed at how far she's come in her egg-cracking skills just this summer, I must say. But then we went to put the batter in the cups and discovered that we were out of those little pastel paper cup liners. Now Annika loves peeling off that paper more than just about anything in the world, so this was a real blow. But, drawing on my quick-thinking mommy skills, I whipped her into a frenzy of excitement at the possibility of making mini cupcakes instead! Could there be anything cuter than itsy-bitsy cupcakes? They're just like babies! Except for the eating them part! Now since we usually use the paper liners, I forgot all about greasing and flouring the cups. We do live in a world of non-stick muffin pans, though, so I thought I would be alright. And, you know, maybe I would have been alright if it weren't for the whole "forgetting the cupcakes are in the oven" part of the story. As we rushed downstairs in a panic, Annika grabbed my hand. She pulled me to a stop and gave me her most beatific smile. "This is just like Aunt Pat!" she declared. As usual, she was right. My Aunt Pat was notorious for her kitchen hijinks. Many of the stories Annika loved hearing the most about her late Great-Aunt were the ones revolving around Pat's love/hate relationship with her stove. Aunt Pat burned so many things in her kitchen (cookies, pizza, her purse, her own eyebrows) that she developed her own Theory of Burnt Food, namely that burnt food is still OK to eat as long as you eat it right away. So her son, Cliff, and his siblings loved it when their mom burnt the cookies, because it meant that they all sat down to eat up all the cookies immediately. Every last one of them. Still, in recent years it is Cliff that has taken over the cookie making for their family, and he is justifiably proud of his skills. Annika, for her part, was beaming with happiness, as if everything now finally made sense for her. She has been struggling so hard with the concept of death and loss. And she is not one to drop a subject until she not only understands it, but accepts the rightness of it. So, in trying to explain to her that, although Aunt Pat's body is gone and we can't play with her or hug her or talk to her on the telephone anymore, we can still have Aunt Pat with us when we feel our love for her and when we remember stories about her. Up until this point, though, Annika seemed to view this explanation as supremely unsatisfactory. Now, having suddenly reminded herself of Aunt Pat at an unexpected moment, she seemed to accept that perhaps there was something to the idea of holding on to someone through stories, even after death. In the end, the bottoms of the cupcakes were unsalvageable. So we just took a knife and lopped off their tops, for a much higher frosting to cake ratio that both girls found delightful. ~~~~~~~~~~ In medical news: we're off to Chicago on Thursday for the next round of banding, and to meet with the surgeon for the shunt surgery. I hope we'll be back home by Saturday night, but I'm packing for longer. ~~~~~~~~~~ Finally, saving the best for last...In my last post, I wished that our family were living September as we had planned it: Anni in preschool, me teaching again, and Frankie expanding her vocabulary to include those (always entertaining) inadvertently R-rated mispronunciations. We're not there, of course, but Frankie is at least striving for a PG-13 malapropism. As Annika, Frankie, and neighbor friend, Sabrina, were assigning Princess roles to one another for their favorite board game, Frankie declared that she was going to be "Sleeping Booby." Sabrina, the very model of second-grade decorum, gasped and covered her mouth in shock when she heard this. But Annika, and oh how I love this girl, collapsed on the floor laughing and then just kept asking Frankie, "Who are you going to be, Frankie?" So I guess you could actually say that I saved the breast for last.

Thursday, September 15, 2005

all weepy, sorry

I just checked on the girls, and Frankie is sleeping with her arm around Annika. I heard them whispering together through the monitor tonight while I was cleaning the kitchen. Finally Annika said, "OK, Frankie, it's time to go to sleep. You have to close your eyes, OK?" Frankie said, "OK. Night-night. I love you." And Annika said, "I love you, too." Perversely, all this wonderfulness is making me so sad tonight. I'm writing this with tears streaming down my face, so this might be the entry to skip if you're not into self-pity. This is what I mean by perverse: I feel like Frankie is holding on to her sister so tightly because she doesn't want to lose her. After all, her recent separation wasn't just from her mom and dad, but also her beloved sister. Or maybe it's that I'm realizing how much it is going to hurt Frankie if we do lose her. Not to mention Jörg and me. I don't know exactly what I'm thinking. Just that this new relationship that Frankie is developing with Annika is beautiful. And I am dreading what has to be done up in Chicago in a few days or weeks. I want to go back to last month and live the alternate reality where Annika starts her preschool and I grouse about my students and Frankie's vocabulary expands to mispronounce words in a completely R-rated fashion. I had plans this month to meet a friend of mine that I met in the hospital just after Annika's second transplant. She was the mom of Jayli, and I met them just before she had the rex shunt surgery that is currently being considered to fix Annika's problem. You probably already know the story because I keep coming back to it like a woman haunted...shunt did not work, retransplant, PTLD, Jayli died. I wrote to my friend to let her know why I was going to have to cancel our plans to meet, and I haven't heard back from her. I know that part of my weepiness in this current situation is all caught up in the memory of Jayli and what her family went through in the months after the shunt failed. And I suspect that part of my friend's silence might be pain from her own memories of those hard times. I'm trying to keep the atmosphere light around the house, but it's not easy. Frankie dissolves into a desperate weeping fit if I'm out of her sight for more than 5 seconds. And she can no longer fall asleep by herself. At night she clings to Annika, and for naptime, it's me. Yesterday it wasn't even enough to fall asleep beside me, she had to lay on top of me in Annika's bed with her cheek resting against mine. Annika, meanwhile, is struggling with her own unhappiness. The past few days she was having fevers with no other symptoms of illness, which always sets my nerves on edge. In the middle of the night she came to me for water and Tylenol and comfort. Her voice wavered a bit as she asked, "How come I have to be sick again already?" But then the morning comes and the fever is gone and Annika is ready for a new day. Tomorrow she plans on dressing up like a bear. Don't ask me; that's just what she wants to do. If anyone has any good suggestions for how, exactly, we could accomplish this without having to actually go and buy Bear-like things, please please let me know. And there have been plenty of moments to make me laugh, appropriately or not. For one thing, Annika has taken to self-diagnosing her state of health. But she doesn't just go around willy-nilly declaring herself "healthy" or "sick" depending on her mood. No, she has a scientific method used for reaching her diagnosis, which she shared with me the other day: Scene: the bathroom in the hospital lab, where Annika is taking waaaaaay too much time in the one area designated for collecting urine samples. Annika (peering between her legs into the bowl): "Oh, no! Look at that!" Me (the panic I now feel every time Annika uses the toilet growing more intense): "What is it? Is everything OK? Is it blood?" Annika: "No, but it's stinky mud poopy." Me: "Stinky, mud poopy?" (I look in the bowl and see that she has, indeed, described it pretty well) Annika: "Yes. I have stinky mud poopy when I'm sick. When I'm healthy, I have stick poopy." Frankie (excitedly tugging her pants down): "Poopy, too!" Pretty damn ingenious, if you ask me. And then there was the incident of the time-out 2 days ago, after she threw a tantrum because Frankie refused to put on the Princess dress that Annika had so carefully chosen for her. Annika cracked open the door just a tiny bit (she's not allowed to open the door during a time-out) and yelled out, "I'm a Princess! Not a Prisoner!" Then closed the door with as little noise as possible. And in the spirit of comedic naughtiness, one last vignette: Annika, Frankie, and I were all in the backyard. The girls were playing together while I was storing things for fall in the shed. Frankie came over to check out what I was doing, and when I looked up, I saw her mouth was ringed in sand. "Frankie!" I said, scoldingly, "Have you been eating sand? Again?" Frankie turns her back to me, and I hear the sound of spitting and spy bits of sand falling to the ground. She turns back to face me and says, "Uhhhhhhhh, no!" OK. I'm feeling much better now. Thank you, keyboard.

Monday, September 12, 2005

the nitty-gritty

There have been a few questions asked by several people, either over the phone or in the comments section, and so here are some answers: Wasn't this awfully sudden/unexpected? Yes and no. I guess the real surprise for Annika's doctors has been how well she has been doing for the past 18 months. When Annika was hospitalized in January 2004 for suspected PTLD and the clot in her portal vein was first diagnosed, the doctors were fairly sure that she would need some sort of surgical intervention, either the shunt surgery or retransplant, within the year. Instead, she appeared to improved with every passing month. When I asked Dr. Alonso to hazard a guess as to how long we would be able to continue along this way after last January's endoscopy, she told me that she had no real idea because she was still very surprised at how well Anni was doing. But, given that she only found one small varix in her esophagus during that scope, she guessed that we might have 5-6 years. Obviously, it's only been a little over 7 months since then, and suddenly Annika has four huge (grade 4, on a scale from 1-4, with 4 being the worst) varices in her esophagus. Not good. Still, Dr. Alonso was not really surprised. I take it that this was more the result she was expecting when this all started 18 months ago. The funny thing about liver problems in kids is that it is rather unpredictable. Well, not funny, exactly. It's one of the hardest aspects of life for the liver parents. When times are bad, well, they're crap. But even when times are good, there's always the fear that the crap is just around the corner. It's hard to get comfortable, mentally speaking. And you end up feeling like the crazy person that no one wants to talk to because you can't just smile and accept the sunshine of relative good health without worrying about the next storm that may or may not appear any damn minute. Annika's good buddy, Shelby, has been recently taken off the transplant list. Which is great, great news. But in some ways that makes the situation more complicated for her parents, because people are constantly congratulating them on their good fortune. But the thing is, Shelby still has a diseased liver, and they know that she is still very likely to need a transplant in the future. Sometime. Just hanging out there over their heads. So, sure there's gratitude and feelings of good fortune, but I imagine it's all tinged with a sort of uncertainty. After all, her mom and dad know how quickly fortunes can change in the world of kids' liver disease. So, yeah, it was certainly sudden. And it was also somewhat unexpected. But not completely. As Shelby's wise mom, Jennifer, pointed out to me when I told her that I was just not prepared for Annika to bleed like that, "Of course you were not prepared for something like this. You can't walk around expecting this stuff all the time if you are to stay sane." If the bandings are successful, is there a possibilty that she might not need surgery -- or that it might be able to be postponed for a time? This was a question from Rowan in the comments, and it is a good one. The bandings are just a temporizing measure. They fix the vessels that are currently at risk of bleeding, but they do nothing to address the underlying problem, which is increased pressure as the blood tries to flow through the portal vein to the liver, but is blocked by the clot. The body is capable of growing new blood vessels from the site of the blockage to the liver, and Annika has already grown some of those new blood vessels, called "collaterals". However, it appears that these collaterals are not growing fast enough to reduce the pressure. Not surprising, given that the portal vein supplies 80% of the blood to the liver (more on the anatomy of the liver). Something has to be done to address the underlying problem, or new varices will just keep cropping up, and she will continually be at risk for upper GI bleeds. The mortality rate for upper GI bleeds like the one Annika had in Dallas from an esophageal varix is around 6-10%, so they are a serious problem. Since the clot is outside of the liver, it is hoped that a shunt can successfully restore blood flow. The shunt, likely made from a piece of her own jugular vein, will reroute blood from before the clot back into the liver. A circulatory detour, essentially. If the clot had grown or moved inside the liver, our only option would be to retransplant, which is why the news from the CTA (last post) was such good news. It all sounds quite straightforward. "Shunt" doesn't sound like such a scary word, after all. But in my head I can't get past the thought that this is not a surgery that our surgeon is really confident will work in Annika. If he had been confident, then he would have done it 18 months ago when the clot was discovered, rather than waiting until Annika had a bleed, giving him the sign that the surgery could be postponed no longer. The real kicker in all this is that if we do the shunt, and it fails, then Annika will need to be retransplanted after all, and could very well be in much worse shape after the attempted shunt than she is right now. So, no, surgery looks unavoidable at this point. The postponing has already been done. We just wish it could have been a bit longer.
Meanwhile we are trying to enjoy our time here at home. The constant fear that she will have another bleed is still with us, but laundry and other everyday tasks are successfully redirecting our attention away from picking that particular scab of worry. We did finally break down and buy a cell phone so that a call to "911" will always be immediately available. And then there is Annika, still mourning Aunt Pat, in her heartbreaking and confused 4-year-old way. Today she asked if maybe on our next trip to Texas ("After one sleep?" she asked) she might be able to do some tricks for Aunt Pat to make her live again, as if dying was just a state of serious depression that she could cheer her out of. My best explanation that death just wasn't like being sick or sad just led to more tears as Anni cried that she really wanted to hear Aunt Pat sing to her. From the back seat I heard her chanting softly, "Please come back to me, Aunt Pat. Come on! You can do it. I know you can. Come back to me. Please. Please. Please." After some silence, she tried another tack. "I have a great idea. How about if I make Aunt Pat some 'No More Dying Soup'?" It's hard to figure out where her little head is at. She knows Aunt Pat only through stories that have been told to her, through pictures, and through talking to Cliff and my mom. Still, she is feeling her absence in a profound and lasting way. And Frankie is struggling with her own Big Issues. She came back home her usual happy and well-adjusted self, showing off the new potty skills she picked up at my sister's house. I could hear the influence of my sister's family in her speech ("Thanks!" she says now, rather than her former "Dink Doo!"), and in her occasional frustration when she asked for something she had come to expect at Monica's house (Gum? I think that's what she was after.) I could tell that she had enjoyed her time at my sister's - Sunday night she wouldn't go to sleep until she had talked to Rayna and Monica on the phone - 3 times. She told Monica, very clearly, "I love you!" and then toddled happily off to bed. But she certainly needs me to hold her much more than before. And sleep no longer comes so easily to her. She refused her nap altogether today, and only fell asleep Sunday when I held her. Tonight she insisted on sleeping with Annika. Anni loved the idea, too. So Jörg got out the wrench, disassembled the crib, and moved it into Annika's room. Not good enough. They fell asleep tonight snuggled together in Anni's bed. I fear that this is going to result in less sleep hours for the two of them. But they are so happy's worth it. We are going to try to let Annika have some fun for these remaining 10 days before we head back to Chicago, to live a normal 4-year-old life. But we did decide not to let her go to her preschool, although she would dearly love to be back with all her friends. For one thing, Dr. Alonso wasn't too taken with the idea of sending her off to school, in case she has a bleed while she's there. And then it also occurred to us that Annika has a history of dropping her platelets quite a bit with any viral infection (i.e., your usual cold). Since platelets are responsible for helping blood to clot, it seems that picking up a little something from her friends might lead to another bleed, or make a future bleed worse. Plus, we want to send her into surgery as healthy as possible. So, normal life...except I've been making a list of the most deserted parks here in town for our mid-morning play time. Good thing she has a sister to play with. So that's the word from our house, as reported by a Nervous Mudder (Annika's latest term for me). It's so wonderful to be home, but it's not the "relax and settle-in" kind of wonderful. It's the "isn't it great we have a moment to prepare ourselves for the storm ahead" kind of wonderful. If you're the praying kind, and find yourself frustrated by my onslaught of medical terms, here are the two main points: Annika needs 1) to last the 10 days until the next opportunity for banding without another bleed, and 2) Dr. Superina's skill to successfully shunt around the blockage, in order to avoid another transplant.

Saturday, September 10, 2005

everyone together again

Ah, home is a wonderful place to be. I thought we would have to stay until today and take the train home, as Jörg was sick this week. I didn't want to push him to come get us, as the last time I did that (about 3 years ago), he passed out while driving and crashed the car. Having thankfully escaped that incident with no injury, I surely didn't want to be responsible for a repeat. But when I called him Friday afternoon, he was feeling much better and arrived to whisk us away at 7:15 that evening. Home looked just wonderful, despite the overwhelming smell of cat piss that hit my nose the instant I walked in. Poor Jörg has been so congested he didn't even notice, but one of our cats has a tendency to protest any conditions that are not up to her exacting standards by peeing beside the litter box rather than in it. And, of course, I had left the house a wreck when we left for the funeral 10 days ago. This morning my first priority was attacking the kitty smell (done, and I hope she's happy), and then doing laundry and repacking a bag to be ready to go to the hospital again on short notice. We came home with a letter from our Chicago docs to be given to the E.R. docs here to let them know immediately how they want Annika treated in case of a rebleed. The doctors have said that the chance of a rebleed in the next 6 weeks is approximately 20%. In typical fashion, I was surprised that the chance was so high (I tend to underestimate risk), and Jörg was relieved that the number was lower than he expected. We have become a truly complementary team over the years. My parents are bringing Frankie home from Kansas City today, and we are all looking forward to a family reunion, for however long it will last. I hope we manage to last the 2 weeks here at home without another bleed. We got the results from the C.T.angiogram just before we left: the clot is still external to the liver. This is very good news. Now we just have to wait for the surgeon to decide exactly what kind of shunt he wants to do in the next few weeks, and then hold our breath that it works. Here are some photos from our hospital stay: Annika was so happy to see Joerg on Sunday when we arrived in Chicago. Annika having fun in her hospital bed with the balloons that Lauren brought with her on her visit. Annika was just coming off sedation, but was still up for a little fun with her first babysitter. Lauren brought Anni a new crown and earrings, just in time for her to get the OK to visit the hospital's main playroom. She swished along the halls, swinging her polyester hospital pj's, which she had pronounced her "pretend princess gown." Once in the playroom downstairs, she introduced herself to everyone by saying, "Hello. I am Annika the Princess. What's your name?" Annika has a chat with her good buddy, Shelby. Sarah and her daughter, Anna (liver transplant also at CMH), visit Annika. Anna giving Annika the play-doh she brought for her. Thank you Sarah and Anna! Soon little Natalie, a recent liver transplant recipient, joined in the fun. Liver girl party! And Annika loved it. Natalie is just about Frankie's age, and Annika was pretty pleased to have a baby around her again. Natalie, for her part, was pretty pleased to be in on the big girl action. We all got to enjoy one of Natalie's trademarked Huge Laughs. I like this picture because you can see her parents, Becca and Jason, laughing behind her. Here you can see Annika's reaction to Natalie's trademarked Huge Laugh. She was pretty amused. Here is Annika, naked except for her underwear (how long, exactly, is this "get naked" phase supposed to last?), doing her best to make Natalie laugh again. I think she's already a Natalie Laugh Junkie. Annika doing an art project for her favorite nurse, Beata. As we were driving home, Annika started crying, "Oh, I miss Beata so much!" She is such a drama queen. When I got out the camera, noting that I hadn't gotten a picture of Beata with Annika for a very long time, Beata seemed not all that thrilled to see that it was picture time. "I was wearing this exact same scrub last time you took pictures, too," she sighed. It's all about the memories, though, Beata. And in case you've been wondering about what Frankie's been up to, here she is wandering around the wonderful wooded area around my sister's house. I think Monica said that they had found a bunch of baby snakes on this day. My sister takes great photos. And here she is with her cousins, Darcy and Rayna, doing a portrait shoot at Wal-Mart. Nearly 2 years old, and this was her first professional photo. Annika, at nearly 5, still has not had one taken. Frankie had so much fun with her cousins, and it was particularly exciting to get to hang around Rayna, who is so close in age. And I leave you with a photo of Frankie, preparing to audition for KISS Notice how her well-behaved cousin, Rayna, is looking at her like, "Hey. Is she allowed to do that? On official Wal-Mart portraits?"

Friday, September 09, 2005

tentative plans

I don't have much time to update, as our friend Lauren is upstairs with Annika and she needs to head home before rush hour traffic begins. Annika had the scope on Wednesday. They found four huge varices (swollen blood vessels) in her esophagus. One of them was a "humungous honker," our senior attending doctors exact words. That varix was the likely source of bleeding, and Dr. Alonso said that it was probably just gushing blood on Friday night. The surgeon here, Dr. Superina, asked for another C.T. angiogram to be done to check out the state of Annika's blood vessels and clots before deciding what surgical action to take. We are hoping like hell that the clot has not moved into her liver, which would mean that no shunt in the world would do the trick. Meanwhile, he has asked that all of Annika's varices be banded before he schedules the surgery. Due to some difficulties encountered during the procedure on Wednesday, they were only able to band one varix (the largest one, at least). So we'll have to wait 2 weeks before the varix will have shrunk down enough to make another go at banding possible. Dr. Alonso thought that maybe we should stay here while waiting for the next scope and banding, but they decided after some discussion that she could go home. I'll carry a letter with treatment instructions around with me, in case she has another bleed while we're at home. Really, the treatment is not all that complex. Start an I.V., start giving blood, and hope that the bleed is not too bad. I'll post pictures of Anni's hospital stay shortly. We're all sick of it here already, though. There's no question we're going to be seeing a lot more of Chicago in the next few months, though. Finally, thank you for all the warm wishes, healthy thoughts, and prayers sent our way. It's been lovely sneaking down to the computer and reading all the lovely words sent Annika's (and our) way.

Tuesday, September 06, 2005

what are those circle things under your eyes?

Title: Annika's first words to me this morning. It's strange to be so caught up in worry for your own child when so many people are dealing with tragedy on a grand scale. Sunday morning on the medical jet from Dallas to Chicago was the first opportunity I had had to catch up on the news, as Annika was involved in some lengthy conversation with one of her paramedics and so left me time to read the paper. Of course, I have not been watching the news in the hospital room with Annika right there and old enough to understand sorrow when she sees it. So I was pretty behind on events. Needless to say, I was shocked to read the accounts and shocked to learn that help had been so slow to reach those affected. But it's strange. Looking at Annika strapped to a gurney with monitors attached and I.V.s flowing, I realized how lucky we were to have access to this top-notch medical care. But yet, I didn't really feel all that lucky. The feeling is almost something like guilt that, despite the much more desperate suffering of others so nearby, you still feel angry and frustrated and sad that this is happening. And reading the accounts of parents who sent their children off, or left them at hospitals, hoping that they would be better off, really touched an emotional nerve. I am missing my Frankie dearly. The very idea that sending her away from her mom and dad is somehow better for her seems insane, but it is undeniably true. We are stressed here, and busy trying to entertain Annika, who is confined to her bed. Frankie would be seriously unhappy here, unable to run around and surrounded by tension and alarms beeping at all hours. I wonder what her little 22-month-old brain is making of this sudden turn of events. Still, I know that I sent her off to be with family who love her very much and are giving her the best care and attention. I talk to her on the telephone at least once a day, and get regular reports. How much better than the parents who are now forced to stick their kids' pictures to bulletin boards, hoping to get word. But still I cried a little last night after Frankie told me on the telephone, "Night-night. I love you!" Today we finally got to talk to Annika's regular doctors. They are going to do an endoscopy tomorrow, with probable plans to treat any bleeding varices that they find. We had still been hoping, in our own way of denial, that perhaps all the bleeding from her bottom had been a case of some massive hemorrhoids, but Dr. Alonso cocked her eyebrow a bit and said that it was most likely a gushing varix (swollen blood vessel) that was bleeding so quickly that it was passing immediately through her system before it had time to clot. She told us that she is anticipating that Annika will be having a surgery called a Rex Shunt. If you read through the article linked (which, by the way, is from the hospital where Annika is currently inpatient), you will discover that it has an amazingly high success rate. But that success rate, you will note, is cited for children "with no other underlying causes for portal vein clotting." Unfortunately, Annika does not fall into that group. This surgery has been done on only two other children here after living donor liver transplants. The first child came through with flying colors. Problem solved. The Rex Shunt failed for the second child, the lovely and sweet Jayli, who then needed another transplant and subsequently died. Thus, the doctors have been putting off the Rex Shunt with Annika, despite knowing about her clotted portal vein. We have no idea how all this is going to turn out. So, yeah, I've got circles under my eyes. And I'm trying very hard not to throw up. I need to be optimistic for Annika's sake, and there is a part of my brain that is shouting, "Hey! This could be it! The answer to all Annika's problems. Let them go ahead and do it, already!" But you can probably guess what the larger part of my brain is saying, and it only has to whisper for me to hear it.

Sunday, September 04, 2005

knock-knock! who's there? Stress!

We are now in Chicago at Children's Memorial. They flew us here on a medical transport. I sent Frankie with my parents on Saturday morning, and they dropped her off to stay with my sister until we know what is going on with Annika. Here's what's been happening: Frankie, Annika, and I arrived in Dallas on Wednesday. It was a long day of travelling, and we were all exhausted. We did make it to Aunt Pat's visitation, though. Annika wanted to go say "Goodbye" to Aunt Pat, and so I took her in to the viewing room. Probably a mistake, as she spent the next hour or so sobbing while Frankie sang, "Anni, Don't Cry" to her. My mom calmed her down by telling her lots of "Aunt Pat stories," which Annika loved. That night, she went right off to sleep, exhausted from the crying and the travelling. Frankie was a bit more difficult, as the excitement had left her wide-eyed. I had to walk her up and down the hotel hallways for 30 minutes before she finally relaxed. Annika woke me at 1 a.m. complaining about her tummy. I took her to the toilet and checked the contents, as I do everytime she has a poop. When I saw how dark the bowl looked, my heart beat a bit faster. I turned on the bathroom light so I could see better, which elicited much grumbling from Annika. With the light on I could see that the poop really was completely black. Wiping her bottom, I discovered that the poop was sticky and just the wrong consistency. Every liver mom knows to look out for tarry, black stools as a sign of a G.I. bleed, but I still wasn't sure if that was what I was looking at. So I took her temperature, 102, and gave her some water. I considered giving her ibuprofen for the fever, but I had left my syringe at home, and I was also worried that it might irritate the bleeding, if that was what was happening. Worried, I put her back to bed and watched her for maybe 30 minutes. A few hours later she was up, the fever gone, and back to her usual self. I breathed a sigh of relief and took the girls down to breakfast. Annika, normally a great eater in the morning, declined everything. Finally I got half a yogurt into her. When she rushed to the toilet with my mom, I followed her in. Another check, and again the suspicious looking stool. It was time to leave for the funeral, so I loaded the girls into my parents' van and borrowed mom's cell phone to call Chicago. The doctor there told me to take her to the E.R., but agreed that I could go for an hour to the funeral as long as Annika was acting her normal self. I had to sit on the side of the church away from my family during the service. Annika was in the kids' room with her sister, and, although I had explained the situation to the woman there and made sure she understood that she should dial 911 at the least suspicion, I still felt like I should pop in myself every 5 minutes or so to make sure she was still looking fine to my more experienced eyes. Pat's service was very moving, especially the tribute written by her son, Cliff. He told wonderful stories about Pat as a mother, including her many misadventures with the oven. My brother-in-law, Grant, played his guitar and sang a song, and I got to sing a lot of hymns that I have not sung for many years. I had decided to skip the graveside ceremony and the lunch afterwards in order to get Annika to the E.R. We went to the closest hospital, but we were only there a bit over an hour before they had arranged to ambulance us to the Children's Medical Center of Dallas, where they have a pediatric liver transplant team. The labs run determined that Annika had, indeed, had a bleed, but she seemed fine and the hope was that the bleed had already stopped of its own accord. The doctors there decided that they would give her a blood transfusion as well as platelets to get her blood counts back up, and then release her to fly back home and follow-up with Chicago. Just to be safe, they decided that they would keep her hospitalized until it was time for us to go to the airport. On Friday night around 8, she went to the toilet and filled the catch basin with bright, red blood. She repeated this scene about every hour for the next 8 hours. Finally, at 4 a.m. on Saturday morning, black clots started showing up, and by 9 a.m. she was back to black, tarry stools. Needless to say, we missed our flight on Saturday morning. The doctors there decided that she needed to be transferred to Chicago via a medical jet, and began making the arrangements. Frankie had been spending the past few days mainly in the company of my sister and her family, and my parents decided that they would drive Frankie to Kansas City, leaving her at my sister's house. It was incredibly hard to send her off like that, but I've received regular reports that she is happy and having a great time and is even acting like a potty-trained kid for my sister. After a long and grueling day waiting to see if the bleed was truly over, and waiting to hear what the plan was from Chicago, we finally were told that they would transfer Annika at 11p.m. that night. An hour later, I got a phone call from the attending doctor in Chicago telling me that they had changed their minds. Annika would be safer staying in Dallas until she could be discharged. I was completely shocked. We had planning on this transfer, and acting accordingly. Although the facilities in Dallas were wonderful, and the doctors fantastic, I wanted nothing more than to be in Chicago, where I know the doctors and the nurses and they know Annika. We have no idea what is going on or how bad this is going to get, and it's simply more reassuring if you're someplace familiar. Someplace that knows Annika inside and out. Not to mention someplace that Jörg can get to easily. And then it hit me that there were two ways this situation could play out: 1)Annika gets worse. In that case, something dramatic would have to be done, and I would simply rather have that done by Annika's regular doctors. 2)Annika gets better. Hooray! But, oh no. Then I would have to take Annika back home on a regular commercial flight. Annika looked completely fine in the hours before she had this huge bleed. So how was I to know that I wouldn't get her up in the air and then, suddenly, a massive bleed? With only flight attendants to help? No thanks. So there I was on the phone to the attending in Chicago, and I was trying to explain the two points above to him when he evidently grew weary of listening to a freaked-out parent on a holiday weekend and he hung up on me. Yes. Hung up on me. I went out into the hallway and found a quiet corner to cry for 10 minutes or so. Then I went back to the room, where Eric and Cliff were entertaining Annika, and called Jörg, who did not cry, but instead began tracking down a patient representative in Chicago to register a complaint. Then I went back to my little corner and cried for another 10 minutes. A few hours later, minds had again been changed and we were scheduled to be transported by medical jet the next morning. So here we are. There probably won't be any major decisions made until Tuesday. Annika is still bleeding, as evidenced by a pretty big drop in her hemoglobin this morning, but at least it's not pouring out of her behind. While we were in Dallas, Annika decided that she was old enough to take over calling the nurses herself. While she was sitting on the potty filling the bowl with her blood, she had the door open telling Cliff and Eric Knock-Knock jokes. When I told her that we had to call the nurse to tell her about the blood in the toilet, she, of course, insisted that she do it herself. She pushed the button and, when the nurse answered, she said, "Hi! Blood is coming out of my bottom! And I was making some jokes!"

Friday, September 02, 2005

Wow! They have daddy's drink in Texas!

Title: Annika's first words upon setting foot on Texan soil, when she spied an vending machine with Powerade on offer. She was duly impressed. So, yes, we managed to find some exorbitantly priced flights to Dallas to attend Aunt Pat's funeral. Bereavement fares, my ass. More on the funeral, the flight, and all that later. Now I must hurry back downstairs to Annika. Yes, we are in the hospital here in Dallas (Children's Medical Center of Dallas). Annika had an upper G.I. bleed, probably in her tummy, and we had to take her to the E.R. yesterday. So far she is doing great, and we did manage to make Pat's service, thank goodness. I hope I'll be able to update more later.