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.

Friday, December 30, 2005


Ah, the delicate parental torture of feeling torn between your two children. Obviously, of the two girls, Frankie's been dealt the easier hand. But that's not so obvious from the point of view of a two-year-old. And, really, we don't (and shouldn't) expect her to see it that way. As far as Frankie is concerned, her world has been turned upside down, and all the normality that has come to signify safety for her has disappeared. Mostly she is dealing with it extremely well, thanks to the loving ministrations of my mother, thankfully retired and able to devote so much time to caring for her at our own house, which at least maintains a familiar environment for her. But she finds her own way to let us know that she's having difficulties. She fights going to sleep, her limbs twitching with the electricity of sleep-deprivation. And, normally an adventurous and satisfyingly healthy eater, she seems to be conducting nutritional studies funded by Hidden Valley, investigating the effects of a diet consisting entirely of ranch dressing sucked off of McDonald's french fries. I've been spending my nights at the Kohl's House with her and my mom, but usually I shower, dress, and leave for the hospital before she awakes in the morning. This morning, though, I overslept. Frankie was delighted to find me still in bed when she got up, and I decided I would take advantage of this opportunity to finally remind her of her once healthy eating habits. I called Jörg to see how the night had gone, and to let him know I would be a bit longer. He asked me to be sure and turn on my cell phone, in case something came up, and I said, "Of course." To my delight, Frankie ate oatmeal, blueberries, and orange juice for breakfast, with a chaser of cold pizza. Finishing up and feeling like Super Mama, I called over to the hospital to get an update on Annika. Jörg answered the phone, sounding very stressed, "Where are you? Your cell phone isn't on!" Annika had become very upset during her respiratory treatment, which consists of a therapist pounding on her chest ("I prefer the term 'percussing'," explained one therapist) to try to loosen the secretions clogging her lungs. After the "percussing," the therapist needs to suction out her breathing tube, another activity Annika despises enough to rouse her out of her generally sedated state. Jörg hadn't noticed her distress at first because he had been outside of the room listening to the doctors' rounds on Annika (the daily report and strategy session for patient care), and by the time he had gotten in there, she was very upset. He had tried to call for my help, and not reached me, to his frustration. Sure enough, my cell phone was still off. I felt terrible. By the time I got over there, she was calm and looking very comfortable. But her fevers have returned, so the doctors have ordered another CT to check if there are any other fluid collections to harbor bacteria. They have also ordered a chest tap to relieve the fluid off her lungs, and to check the fluid collected for any sign of infection, which should yield a final decision on the pneumonia question. Moving a patient on a ventilator is never an easy task, so there will certainly be a lot of action around our little corner of the hospital trying to take Annika on all her field trips. Some answers would be nice, though. I plan on staying tonight until she is through with all her tests, which means I could have a very late night over here. So I decided to spend the day with Frankie, letting her have some fun at a nearby park with a playground. I checked that my cell phone was still on approximately every 2 minutes, so I'm pretty sure that the other parents thought I had some electronic form of obsessive-compulsive disorder. I even checked to make sure that the ring tone was on, and contemplated setting my profile to "outdoors," except I don't know enough about my new cell phone to really understand what that means, exactly. When we returned from our playground fun, Frankie inhaled a bowl of spaghetti and asked for more. So at least we're making progress with one child. Annika, we're all waiting patiently for you, too. Meanwhile, our PICU neighbor, Matthew was successfully extubated yesterday, much to everyone's delight. His white cells still aren't kicking in, though, so the joy was tempered. Well, more accurately, his white cells keep showing up, rising, and then disappearing again. Matthew's dad, Brad (an employee of LaSalle Bank), and Jörg joke that Matthew's white cells keep Banker's Hours. Our PICU suite has become quite the convivial place. Angela and Brad bought pizza for everyone last night and we all, nurses too, sat around in our little common nurse area, still watching our children through the glass walls of their rooms. Our rooms are in a rather private corner of the PICU, so it really does feel like the place belongs to us. I keep saying that they should have installed couches and a fireplace for the parents to relax by while waiting for signs of improvement, until Angela pointed out that the amount of oxygen flying around the two rooms probably ruled out an actual open flame. I said I'd settle for a skillfully painted simulation.
Just since I started writing this, the situation has changed. Even with two transfusions of plasma to lower her bleeding times, they are still too high to safely have the chest tap tonight. So she'll get even more plasma through the night, and they'll do the tap tomorrow morning instead. The CT is still on, but probably won't happen before 8pm or so.
We still find ways to pass the time, though, and not just by staring at her vitals displayed on the overhead monitor. Last night we heard a strange noise coming from Annika's bed. Jörg went to investigate, leaning his head in close to Annika's. A bubble of mouth goo had collected around the tape on her breathing tube, inflating and deflating with the ventilator's puffs (her breathing tube is a little leaky). He rose back up again, a huge smile plastered on his face. "It is Annika! Come here, quick! It's hilarious. She sounds just like Daffy Duck!" Dear Annika, when you read this, please forgive us. You know it's all in love, don't you?

Wednesday, December 28, 2005

voice on the computer

Since I was missing little Anni's voice, I decided to plow through my archives hunting for the movies and audio clips I have posted of Annika over the years, just for the fun of hearing her again. I've posted the ones I found on the side bar. Actually, I've a lot more movies that have been posted at one time or another, but I didn't learn to compress the movies sufficiently until this year. So I won't post some of the bigger ones, since I've got them stored in some free space that the university allowed me to use and I don't want to eat up their bandwidth. And, while going through my archives, I remembered that today is Jayli's birthday. Happy Birthday, sweet girl. It's amazing the ones that you don't forget, even when they are gone so quickly. Years later, I still meet new people here at the hospital who remember her so well, whose eyes still tear when reminded of her, who still can tell the story of the first time they met her.

post-Christmas wrap-up

Christmas morning was not good. Jörg had heard that there was a Starbucks ("Star Box," as Annika calls it) open on Clark street. So I set out that morning on my caffeine treasure hunt, but not before Jörg had called to tell me that Annika had had another bleed, with large quantities of blood coming out of her NG tube. I knew this was really bad news, coming as it did nearly 4 weeks after the shunt surgery was supposed to correct this issue and while she was concurrently trying to recover from sepsis, bowel perforation, and an open abdominal wound. After all the other drama of the past few weeks, it's almost hard to remember that her bleeding was the original issue. As I was walking along Clark street, I was engaging in a little self-calming using the same technique I use on Annika, repeating over and over a comforting phrase. That morning my phrase was, "She is going to be alright." I couldn't squeeze my eyes shut the way I needed to in order to really concentrate and get it right, since I was, after all, searching for an open Starbucks, but I felt like I was doing a pretty good job of it. Then a man holding a plastic bag began his panhandle patter, and, distracted from my repetitions, I just started bawling. In the empty Christmas morning street, the sound echoed off the shuttered store fronts until it seemed more like the sound was all around me, rather than actually originating from me. The confused man, startled beyond what his poor inebriated heart could likely stand, began muttering apologies and saying, "It's going to be alright, baby." Reminded of my own mantra, I calmed a bit and thanked him. I finally happened upon the Starbucks, but it was closed, like everything else. The snow that morning plopped against my face in wet, heavy blobs, washing my face in an assault of weather. By the time I got to the hospital there was no sign of that morning's breakdown on my face. But now medical life continues apace. After the panic of Christmas eve/morning, one of her stronger antibiotics was restarted, as well as the medicine to stop the bleeding, and she improved immediately. Still, her ventilator settings were being steadily increased to support her lungs, leading some of her doctors to suggest pneumonia as the possible culprit for her sudden downturn. Of course, I hopped straight on to the internet and googled "ventilator-associated pneumonia." You'd think I'd know better than to do that by this point, but of course I had to read that VAP has an approximate mortality rate of 30%, and tends to be more serious in late-onset cases, which Annika's would be, coming 9 days after (re-)intubation. Luckily, our current PICU resident has no problem with googled-up parents coming at him with 1,000 questions about their experience with handling VAP (very good, nowhere near 30% mortality) and the likelihood that she actually has pneumonia (he is the doctor least convinced that pneumonia is her problem). I was much reassured, and even happier to see that the nurses were able to begin turning down some of her ventilator settings. My mom and Frankie are still here in Chicago with us, and Frankie finally got to visit her sister yesterday. In fact, when offered the choice of going to the hospital McDonald's first or visiting her sister, she chose Anni with no hesitation. We got suggestions from a child life specialist for how to prepare Frankie to see her sister on a ventilator and generally looking very sick, and she thought showing her pictures of Annika before bringing her back might be a good idea. So I met her at the front desk and we talked about the Polaroids I brought of Anni, explaining the breathing tube and the huge number of IV's going into both arms. We told her that she was sleeping, and that she needed a lot of rest to get better, and that she wasn't hurting. But the thing that Frankie really wanted to hear was that Annika wasn't sad. She repeated that question over and over, needing reassurance on that point in particular. I hate to think what that says of Frankie's current emotional barometer. Frankie seemed to take the actual visit in stride. She wanted to stroke Anni's hair, so I had to kind of bend her over the breathing tube so she could reach her sister's head without dislodging anything. She asked about the purpose of nearly every tube she could see, and was particularly impressed with Annika's foley catheter, used to catch urine. I can only guess what a 2-year-old makes of peeing into a tube. Just in case, I'll be watching to make sure she's not carrying any drinking straws into the bathroom with her. Her aim is really not that great. Frankie, though, has been enjoying her visit to Chicago much more this time. Matthew's little sister, Lauren, was great fun for Frankie. frankie: what was I thinking? lauren: what were you thinking?Frankie at first was calling her "Shelby," her other great blonde friend, but by the second day she took to calling her, "my friend Lauren." Their favorite activity, by far, was dancing together, and by "dancing," I mean, of course, twirling in circles for inhuman amounts of time, in the way that 2-year-olds, with their special inner ears evidently designed for spinning, love to do. Lauren is exactly the kind of gentle and easygoing playmate that Frankie needs to distract her from all the upheaval in her family right now, and I suppose the same could be said for Lauren.sweet lauren, I think she likes frankie a little bit We were sorry to see her go yesterday. The Kohl's House does have a little Christmas tree up, and there were donated presents under the tree for both Frankie and Annika, so Frankie did not miss out altogether. shhhhhh! the christmas tree is sleeping. Meanwhile, I've been spending as much time as possible with Frankie while Annika is kept completely sedated. So Jörg has been spending the bulk of his time in the hospital, including nights. As anyone who knows Jörg knows already, my husband throws himself into projects with a wholeheartedness almost exhausting to witness. So I come to relieve him in the morning and often find him bantering with the nurses, "So how are those 'lytes looking? What about the coag's?" (electrolytes and coagulation labs), "Can you believe that vanc level?" (vancomycin). He no longer refers to Annika as "puffy." Oh no. Now she's "edemous." I tease him that he's on the way to becoming one with the PICU. I tease, but I'm glad he took enough time away yesterday to shave and hang with Frankie a bit. I tease, but I dare you to find any parent more invested in making sure no one ignores any single detail in his daughter's care. Today the plan is to try to reduce her ventilator settings and her sedation, and add in the teensiest bit of formula through her NG tube to try to wake up her GI system. She can start moving a bit more because she has a fancy new dressing for her open abdomen. It's called a "wound vac," and it's essentially a huge sponge that is stuffed into the opening of the wound with a tube attached that continuously suctions out the goop (the goop best left uncontemplated). Because she doesn't have to have huge wads of gauze stuffed under the dressing with this system, her abdomen is much more secure and they have even been able to move her up on to her side every 4 hours. I look forward to those moments when she awakes just enough to feel my hand stroking her hair. I ask her questions ("Are you comfortable? Would you like us to move you?"), and then stare intently at her for several seconds. When the nod or shake of the head comes, slow and easily missed if you're not paying close attention, I enjoy the reminder that my Annika is still there inside that sleeping body. Hearing her voice again is going to be heavenly.

Sunday, December 25, 2005

Christmas? Well, OK. I guess so.

To be honest, Christmas has never been too good to us. Of the 6 Christmases since we've been a family, 3 of them have been spent in the midst of major medical mayhem: 2000 - Annika's first surgery at 6 weeks, 2001 - the discovery that her first transplant was failing and a second would be necessary, and now 2005 - this...this...whatever. The list of things going wrong right now is too depressing to list on a Christmas entry. Then there was a 4th Christmas, 2003, only shadowed by a runny nose, which, a few weeks later, proved to be the beginning of Anni's adventures with PTLD, followed shortly thereafter by the Neverending Rejection Episode. Two out of six just doesn't cut it in my book. The Christmas Elf in charge of the Tiede holiday season has obviously been hitting the egg nog a bit too heavily. It was hard to leave Anni's hospital room last Thursday afternoon. But she was looking comfortable, with a good heart rate and encouraging lab numbers. Still, I worried what would happen if she should wake up and I wasn't there to hold her hand and stroke her side just so and make sure her music was playing. Yes, Jörg was staying with her, but I worried anyway. Then, just before I left, Annika woke up in her usual unsettled state. Jörg was up and by her bedside before I had even reacted, and I watched the way she relaxed when she heard his voice. And then I knew that I was indulging some senseless worrying. As I was gathering my bags to leave, Jörg peppered me with questions: Did I have the list of stuff to bring back? How about the parking ticket? And the keys? The final question he called out as I was practically out the door was the real kicker. "Do you know how you're going back home?" Having driven the route successfully on more than just one or two occasions, I realized that I was not the only one indulging in senseless worrying. I guess when there's so much justifiable worrying going on in, it just tends to spill over onto even the most mundane aspects of your life. Having finally stepped out the door and made the final decision to go, I was suddenly in a mad rush to be home. I jogged to the car, scooted out of the garage, and merged onto the highway ready to put my cruise control somewhere above the legal limit. Luckily, there was little traffic to slow me down, but suddenly all the cars around me were carefully under the speed limit. Off in the right lane ahead of me, I saw why. There was an Illinois state police cruiser, toodling along in no great hurry. Like everyone else, I tapped the brakes and fell into line. But after 5 minutes of good citizenship, I began to wonder if all this was really necessary. After all, I didn't want to speed that much. Just enough to make me feel like home was just around the corner. Besides, I was positive that, if I were to be pulled over, I had an overabundance of tears just waiting for the right moment to appear. Plus, I had a clean record, not even any warnings, and a hell of a reason to be in a hurry. So I took a breath, pulled into the left lane, and passed the police cruiser, above the limit, but not flauntingly so. In my rearview mirror, I saw a mass exodus from the right lane to the left behind me. My rear bumper might as well have been magnetic. All those drivers exhaling at once, "Finally. We can just follow that idiot up there in front." No flashing lights, no sobbing necessary, I was on my way. When I was just an hour away, I called my mom to let her know I was almost home. We hadn't told Frankie I was coming because, well, you never know when something might come up that would make leaving a bad idea. I thought my mom would go ahead and tell Frankie now that my arrival was imminent. My mom, though, thought that leaving it as a surprise would be fun. So when she heard me pull into the garage, she picked Frankie up and carried her to the door. I opened my car door and saw Frankie squinting out into the darkened garage, looking none too pleased with the sudden cold wind on her feet. Frankie didn't see me at first, but when I stood up out of the car seat, I heard her gasp. This was an honest-to-goodness gasp, like all the breath in her little body rushed out in her surprise. Then she shouted, "Oh! Oh! Mommy!" and she begin to try to wiggle her way down out of my mom's arms. My mom held tight since Frankie wasn't wearing any shoes, but I just dropped my bags on the front seat of the car and came running to grab her up. Just as quickly as my arms went around her, her arms wrapped around my neck in a squeeze harder than I thought a 2-year-old capable of. I brought her back into the warm house and hugged and hugged her, Frankie's little arms never loosening as she burrowed her head into my neck. As a little experiment, I pulled the support of my arms back a little bit, and, as I suspected would be the case, she still hung there around my neck, on the strength of her own clinging arms. Squeezing her hard to me again, I knew that this was my early Christmas present. Finally I told her that I needed to put her down and bring my things out of the car. When her feet hit the ground she began to do a little skip-twirl combination move as she laughed the happiest laugh I've ever heard from her. "Mommy!" she exulted, "I am so 'pised wis you!" "Oh, really? You are surprised?" "Yes! Yes! Yes!" After I had my bags in and my coat off, she came to take my hand. "You come pay Yucky Ducks wis me now?" And we played Lucky Ducks for the next 30 minutes. I set out the red, green, yellow, and blue ponds and then asked her which color she would like to be. "Orange!" she replied without hesitation. Oh, you girls of mine. Must you two always blaze your own paths? So that was the best welcome home, ever. Of course, I was mindful of all those times when my return home, admittedly after a much shorter time away, was greeted with only mild to middling enthusiasm. It's a disappointment to feel you're not missed, even though you know it's a sign that your children feel safe and secure in your constancy. And now I was finally getting that pure joy at a homecoming, and here I was worrying about the psychological ramifications, and whether or not Frankie's need for security was being met throughout all this. So, yeah, it's no wonder parenthood will drive you chase-your-tail-both-directions crazy. For the rest of the evening I just basked in the glorious wonder of my over-the-top two-year-old. After her genuine and unabashed display of joy at my arrival, I was treated to several hours of Frankie's slightly more artificial displays of happiness. All it took was a look or a funny sound from me, and she would pop out her belly and slap it with both hands while emitting this ha-ha-ha-ha-ha-ha laugh that, while coming from a place of real delight, sounds just the tiniest bit forced. It makes me laugh, anyway. I marveled at the changes in my little one in just these past few weeks. Let me tell you, if you think it is disconcerting to hear your child talking just like you sometimes, just imagine hearing your child sounding exactly like your mother. "Oh, gracious!" Frankie scolded her animatronic pup, "You are making such a mess!" I'm just waiting for the moment she exclaims, "Heavens to Betsy!" and throws up her hands. I was doing fine myself until it came time to rock Frankie to sleep. My mom had moved the rocking chair (or had Jörg move it, more precisely) into the girls' bedroom, so that's where we sat together, listening to Frankie's current favorite lullaby CD. Sitting there, looking around the newly decorated room which had tickled Annika's fancy so much, I missed my little imp still in Chicago. But it was the bunk beds that really got me. Bunk beds are for two to sleep in, you know. That's where her absence was most noticeable, with her new pink bathrobe (passed down from her neighbor/hero Sabrina, as all her favorite things are) hanging from the top post. That night, freed from the responsibility of staying in the PICU with Annika, I decided a beer or two were in order. So I made myself a dinner of two slices of toast, and downed the first bottle. Normally, I'm a little off-balance after only one beer, given how out of practice I am at holding my liquor. But that one little beer didn't even make a dent. Two more bottles quickly followed, with similarly little effect. I can only assume that I had spent so long keeping myself on high alert that even three beers, being absorbed by only two measly slices of wheat toast, were not enough to dull that sharpness. Giving up, I headed for bed. As I settled in, the thought occurred to me that, if something were to happen at the hospital with Annika, I probably had had too many to drive, even if my mind had refused to go to that blurry, soft-filter place. Damning my shortsightedness, I made sure the ringer was on on the bedside phone, and hoped all would be well. In the middle of the night, I awoke to the unfamiliar sound of a child crying. I knew it couldn't be Anni, with her vocal cords immobilized by the breathing tube, so I was struggling to understand the sound. "Matthew!" I thought, assuming it was our PICU neighbor. "Oh, wow! He's finally been extubated. You go, little man!" But then I pulled up enough out of sleep to remember that I wasn't at the hospital, and the sound was, of course, Frankie. I went to her and found her sitting up in bed. "Mommy!" she sobbed. I reached over to her, "Lay down, little one, and I'll rub your back." She flopped down on her tummy, but turned her face to the side to look at me. "Where's Nonny?" she asked, for the first time. "She's still at the hospital, sweetpea. She's sleeping. She is still very sick, and needs lots of rest and special medicine from the hospital. She will come back home when she is all better again. Daddy is staying there with her right now, keeping her safe, and they are both sleeping." And so she drifted back off to sleep, and slept for 14 hours that night, exhausted from the many restless nights she's spent alone in a room meant for two. The next day, Friday, was less dramatic. We ran errands and organized clothes and cleaned house and it was all a pretty good semblance of normal life. Jörg called and said that Annika was still holding steady, and we all went to bed much easier that night. I drank only one beer, though, and only because it was the last one in the fridge. Just in case. And I still checked to make sure the ringer was on. Yesterday, I returned to the hospital with my mom and Frankie. Frankie, in the back seat with my mom, fell asleep almost as soon as the car left the drive, and I was left to switch between radio stations, searching for something besides Christmas music. Willing my grinchiness away, I compromised on a station that offered only intermittent holiday cheer, rather than the relentless non-stop of most of the other stations. (They don't call them Mannheim Steamroller for nothing. There's no escaping those guys.) Looking through my rain-drizzled windshield at the gray sky, I saw that there were thousands of birds flying south. The sky was just filled with them in all directions, in several groups of very loose "V"s. "Hmmmmm," I thought to myself, "Aren't you guys a bit behind schedule? You're not really beating the winter weather at this point, you know." Poor birds. Then, a few minutes later, I saw a group of stragglers. But these guys weren't flying south with the others. They were resolutely on their way east. "Wrong direction, guys" I thought, because I'm pretty sure having mental conversations with birds is not a sign of a nervous breakdown or anything. But then the radio station started playing a Christmas song, and there I was, headed away from home on Christmas eve. Totally the wrong direction, myself. So I gave them a thumbs-up, which, of course, I know birds don't get, and wished them well on their flight. Frankie awoke as we were passing the lights of downtown Chicago. "This is 'cago?" she asked. When she heard that it was, she declared that she wanted to see Nonny. I hadn't been planning on taking her in to see Annika while she's on the ventilator, figuring that would be kind of scary for a 2-year-old. But she was not to be dissuaded, so I finally agreed. Arriving at the Kohl's house, though, we discovered that Matthew's little sister, Lauren, was at the house. She was up to celebrate Christmas, and also to prepare to donate another round of stem cells to her brother. Lauren is 2, like Frankie, and also like Frankie, she hasn't been allowed to play much with other kids lately, out of fear that she'll pick something up that will spread through the family to their sick siblings. So Frankie and Lauren were excited to play together, and I left her happily playing when I went over to the hospital (but, of course, I did offer to take Frankie and was much relieved when she said no). I was glad that Frankie had not come with me. Annika was not looking good. She has gotten much puffier as the fluid in her body is stored in the wrong places and her eyelids, swollen like the rest of her, were an angry purple shade. One look at the numbers on the monitors also told me that she had slipped in her recovery. Her heart rate, comfortably slow when I had left, was back up to the rapid beating of a body under stress, and her oxygen levels were down, despite the fact that I saw that her ventilator settings had increased considerably over the past two days. Jörg told me that her labs today had been horrible, with her liver numbers shooting up (the labs that let you know how healthy the liver is, or can also indicate infection status), as did her coagulation time (the amount of time it takes blood to clot - since Anni's been a bleeder, this can spell trouble). And, evidently, her chest x-ray from this morning did not look good. So, who knows? Another infection some place else in her body? Pneumonia? Liver troubles? We're back to wondering what the next step will be. Then, just to make sure the holiday was greeted in style, Annika had another acute bleed last night. Yes, it's Christmas as usual around here. I'm thinking of just moving the whole damned holiday to April, for good. But I suppose that, unless I plan on storing the kids in the basement for the 3 months leading up to Christmas, they're going to know something is up. Plus, if I really follow through on the whole Christmas postponement thing from now on, I know it will be exhibit A during my kids' group sessions describing how their parents ruined their childhood for them. "Oh, yeah? You think your mom was crazy? Well, mine was so superstitious that she pretended Christmas didn't happen until April. That's right, the Christmas tree came out with the daffodils. Cuckoo!" So bring it on, Christmas. We've taken you before, and we'll take you again. I believe that Anni will be just fine. I believe that Anni will wake up and be so pissed that you have come and gone already while she was sleeping. So watch your back, Christmas. Anni's got a long memory, you know.
If you've made it through all the weep and whine above, then you deserve some real Christmas spirit. So here's my Christmas wish for you: Find someone near and dear to you, and give them a hug. But not the usual arms-resting-lightly-on-the-back kind of hug. Pull them hard against your chest and rest your head on their shoulder or chest, depending on the height differential. Then hold that position, tight, until it feels right. OK, you might get some funny looks. If you feel like being mysteriously obscure (really really obscure), you can say, "Hey, it's a Frankie thing." If you're feeling more straightforward you can just say, "Hey, I love you." So it's sappy. So what? I hope it gives you as much peace and joy as it gave me. Merry Christmas.

Thursday, December 22, 2005

Santa's off the hook

Last night I made a playlist with the mix cd's that have come in the mail for Annika. I love those notes about your own children, and how they love this particular song or that. Sharing the music that calms your own soul, or soothes the wild streak that seems to pump through your child's very being, is a lovely and intimate gift. So, thank you. This morning she woke up at her usual time and did her usual squirm in the bed, which really gets her traveling since the covering of her air-bed is gore-tex and just right for sliding. She waits for us to scoot her back up again (her bed is on a slight upward incline to help with breathing), and then repeats the trick over again. Sometimes we take her legs and help her to stretch and move them, gently flexing her foot up and down. We take off her arm immobilizers, and stand cautious guard over her breathing tube. This morning, though, nothing we were doing seemed to make her happy. One of the difficulties of being on the ventilator is that you cannot speak, since the breathing tube passes the vocal cords and keeps them from vibrating. So communication with her is one giant game of 20 questions, in which "yes" and "no" are the only possible answers, indicated with nods and shakes of the head. We were going over every possible body part that might be bothering her, only to see her shake her head emphatically, when I finally thought to ask her, "Do you want us all to be quiet so you can listen to your music?" A relieved nod of her head. The song that began playing at that moment was The Innocence Mission's version of "Edelweiss." She raised her eyebrows, eyes still closed, in an expression that I take to be the soundless version of a sigh, and relaxed into the sound. You've heard of people living in the same household beginning to synch up, or even beginning to resemble one another? Could there be something like that at work with Annika and her glass wall PICU neighbor, Matthew? Last night Annika's hemoglobin held steady and she just looked much better. And Matthew last night finally slept comfortably for the first time in weeks, with no major drama through the night. Today I'm heading home to get a Frankie fix. I'm going to bring her and my mom back to Chicago with me on Saturday morning. Jörg and I will divide our time between Frankie and Annika on Christmas, making sure that Annika is never left alone, of course. It's impossible for me to be such a grinch when I've got my little Frankie around, so no more jokes at Santa's expense. (But don't hold me to that, please.)

Wednesday, December 21, 2005

up and down and back around

So my jubilation over Annika's rising hemoglobin was shortlived. Yesterday evening she dropped again and had another transfusion. But the transplant surgeons are happy with how the gaping wound in her abdomen is healing. I can't call it an "incision" right now; that just sounds too normal, too closely related to a paper cut. I think my foulish mood is due to the nightmare I had last night, which involved lots of blood and being trapped in a theater that resembled a scary McDonald's (not that those places aren't already a bit scary already). In the middle of the night I left the room to go get a drink of water, and saw that the dialysis machine had been removed from our PICU neighbor's room. So I smiled a bit to myself that my friend's wish had come true (removing at least one machine before Christmas). Then Jörg brought in the coffee this morning bearing the news that the machine had actually malfunctioned, and they had actually had a very rough night. Sending nothing but healing wishes to Matthew.

Tuesday, December 20, 2005

chloral hydrate is your friend

After nearly maxing out her allowable morphine and versed dosing, chloral hydrate was added to her sedation arsenal last night. And, finally, peace settled over the room. A massive-quantity-of-drugs-induced peace, but whatever. Actually one of our PICU nurses, Genny, suggested this option days ago. But, you know, our PICU nurses rock. Hard. And I'm not just saying that because, evidently, they are reading these entries (Hi, guys!). They really are amazing. Our experience in the PICU this time has been so much better than our memory of the PICU pre- and post-transplant. And it's mainly because we haven't felt that the nurses' job description includes the line, "Chase parents away from bedside." (And I should have noted that my PICU Parent/Nurse "manifesto" was actually just my thinking after a conversation I had with our nurse about the difficulties that might arise from allowing parents more participation in PICU care. In particular, how to deal with the touchy issue of teaching parents how to be good PICU parents. It's not as if it's covered in the "What to Expect..." books. So it was actually a lot less dramatic than "manifesto" made it sound. But, like Annika, I tend to go for the flourish. Still, I'll send it to those of you that asked, including the additional suggestions from other parents.) So last night was wonderfully serene. Her hemoglobin was again dropping and the blood bank had blood on hold for her, but then (Christmas miracle!) her hemoglobin, at the very border of too anemic, began rising again. We haven't seen her hemoglobin rise spontaneously (i.e. without transfusion) in weeks and weeks. Not only was that great news in itself, but also meant that she avoided having to have another I.V. placed to give the nurse sufficient access for all the stuff being pumped into her.
I can't call it a day, though, without indulging my obsession with ventilators. My erstwhile PICU neighbor and I were yesterday discussing the difficulty of constantly readjusting your goals to deal with the setbacks and general slowness of recovery for a critically ill child. (Remember my last goal, "conscious for Christmas"? Not happening, of course.) She told me that her new goal was to have one of the machines removed from their crowded room. Her son is on a ventilator, too, but he's also on dialysis and his I.V. double pole is even more crowded than Annika's, which really is saying a lot. When her son's doctor asked her which machine she most wished to be rid of, she replied without hesitation, "The ventilator." She told me that the doctor was surprised that she hadn't chosen the dialysis machine, since it involved a neck shunt and cycling the blood out of his body and was just so much more invasive. But I think I would have made the same choice. There is a difference between "life support" and being on a ventilator, but the difference, surely non-subtle to a medical professional, is more difficult for us to recognize here at the bedside. There is something so elemental about breathing that any type of machine support leaves us feeling our child is more vulnerable. While I know in my head that a functioning liver and kidneys are necessary to sustain life, their functions are hidden and their jobs more difficult to describe. But the breathing of the lungs and the beating of the heart, their functions are clear and I can see and feel them working so easily. Who doesn't remember the magic of first learning to feel your own pulse? And watching a chest rise and fall as a sign of life has been immortalized in songs and poems over and over. The ventilator, such a commonplace to PICU professionals, stands as a threshold to a boundary we parents would rather avoid. So, yes, I'd choose the ventilator, too.
Some questions that have been asked and not answered:
  1. Amanda asked if Annika's abdomen had been left open before. Yes, it has, after one of her transplants. However, it was only for around 5 days, not this crazy 3 weeks stuff that they're talking now. Amanda also was wondering about the mystery of Annika's bleeding issues. The source of her bleeding is no real mystery: huge esophageal varices. The only mystery is why she still has varices after the shunt surgery, when the shunt appears to be working. The doctors did some research and found that there has been a case of a shunt taking 4-6 weeks to work. So we'll hope she's taken that route, rather than having vascular issues that the shunt has not corrected, which is another possible explanation. Meanwhile, the bowel perforations and the massive abdominal infection have taken center-stage as cause for concern, and we've not been talking much about her bleeding. They are planning to rescope her in 5 weeks, assuming all is going well with the perforation and infection.
  2. Do I teach writing or English or composition or something along those lines? Nope. Those gigs are hard to come by, you know, and for some crazy reason they tend to give them to people who are actually qualified in that area. I teach a computer programming course, and not even a hard-core programming course, but the gentle introduction offered to students who are otherwise completely uninterested in computer science. My proudest instructional moment was when I decided to teach the formal conditional structure by creating a virtual bar bouncer. I am, though, a big proponent of writing as therapy. Not just writing down the facts, but trying to shape them into a narrative and draw connections with larger ideas and other experiences. That's why I started the Postcards from Holland site, which I am sorry to say I have sadly neglected. Although the ease of starting your own blog has made such an endeavor somewhat unnecessary.
  3. Would we enjoy visitors? Yes, Sarahlynn I would love to meet you. My social calendar is, surprisingly enough, completely open. Of course, please come by only if you're all healthy. Obviously Annika shouldn't be exposed, but any sickness I might contract would be too easily passed onto her before I even showed any symptoms to indicate that I should stay away.
  4. How do you stay sane in a situation like this? I have this game that I was playing with some of the nurses, but I have kept with it long after everyone else has grown bored: I try to come up with celebrity look-alikes for each member of our medical team. I think I'm going to have to subscribe to People or Us magazine, though, if I really want to take my playing skills to the next level. Mainly Jörg and I indulge our penchant for dark humor. Examples:
    • When Dr. Superina came out of surgery to break the news that the rex shunt wasn't going to work and they were going to do the distal splenorenal shunt instead, he drew a diagram of her anatomy on a white board to explain the problem with the rex and how they were going to do the alternative shunt. As we sat together in the lounge afterward, we mulled over the information. "So I guess this other shunt is easier...At least it looked that way on the board." "Of course it's easier. Didn't you see? He just has to erase a few lines! No big."
    • When the respiratory therapist came by today to do Anni's treatment, which normally involves banging around a bit on the back to loosen congestion in the lungs, we expressed some concern about getting to Annika's back while her abdomen was still open. "OK. We'll just roll her over and ask her to please put her hand right here and hold everything in!" "Make sure you've got Dr. Superina's page number close by. 'Dr. S! I think we lost something over here!' " "Does this go back on the left side or the right?" The respiratory therapist shivered and said, "Oooo. You're putting my back in knots!" Then she was paged away, and we haven't seen her since.
  5. Did Jörg really beat up Santa Claus? What a silly question. Of course not. We just egged his sleigh.

Monday, December 19, 2005

next time with a marching band

They took Annika back to the OR early this morning. Because she is on the ventilator, it was a regular parade out of the PICU. She was wheeled down the halls in her new airbed, which is larger than a regular hospital bed and steers with the precision of an 18-wheeler on flat tires riding a mudslide, followed by an anesthesiologist squeezing a little bag to push breaths into her, while trailing her double I.V. pole flashing lights and beeping joyously, while Dr. Superina brought up the rear like the grand marshall. Because it was so early, and the night before so long (Annika started kicking like a Rockette every few hours to see if maybe she could shake off the sedation), I had not yet had a shower. But Jörg had at least brought me a large coffee, bless his caffeine-bearing heart. After abandoning the parade at the doors of the OR, I ran back to the room to retrieve the cup left behind. Her room, emptied of her bed and the various I.V. pumps, looked so spacious and open. But the ventilator was still there and soldiering on, puffing its breaths without benefit of lungs to receive them. It was a bit sad, all that useless breathing. Jörg and I sat in the surgical waiting room together, watching the clock and catching bits of cell-phone conversations. One tall woman wearing the kind of corduroy skirt that only looks good on the blessedly svelte, was making lots of calls and repeating the same information over and over, losing none of the stunned tone of disbelief with each repetition. Knowing the hospital as well as we do, it was clear that her daughter was going up to short stay after her surgery, which meant she might even go home this evening. Funny to realize how far we have come, when the prospect of weeks of intubation and an open abdomen doesn't even elicit that tone of shock in our voices anymore. When the tall woman called her own home, she followed up her usual recitation of the medical facts with a barrage of questions of her own. "How are the twins?" she asked. She nodded her head eagerly as she listened to the reply. "What time did they get up this morning?" A few seconds later she repeated more insistly, "But what time did they get up this morning?" I knew what she meant. Not knowing such basic facts as the time your own children awake in the morning is a strange feeling, made even stranger when the surgical waiting room of a children's hospital is an alien environment. We were practically in home territory, though, and less worried than we'd been many other times in that room. My old rocker had been moved into the waiting room, and I settled into its familiar seat. It was the rocker that was brought into Annika's hospital room before her transplants, and we spent many hours in that chair together. I gave a silent thought for Lauren, the little girl commemorated on the plaque adorning the chair, whose loved ones hope we remember to cherish each moment of life. Barely an hour later, she was back out again. The sutures in her bowel had held together, and the infection was showing improvement. Altogether, nothing but good news. Still, the surgeon told us that the earliest she will be extubated is sometime next week, assuming she continues to improve at the current rate. And he estimates it will take about 2-3 weeks for her abdomen to be closed. So patience is the name of the game around here. The return parade was even more jovial. I suppose there was relief that Annika, with her abdomen so often hiding unexpected (and frequently unpleasant) surprises, was showing nothing but improvement. After finally getting a shower and lunch, I headed to the hospital lobby for a coffee. Rounding the corner I saw that the hospital had set up Santa Claus, complete with a red throne and elves. He was surrounded by wiggly children, all murmuring, "Santa!" and eyeing the presents he was handing out to each child. They were all so excited and happy, and (wouldn't you know it?) I started to cry. I can pretend that Christmas will happen in February this year, but the rest of the world is carrying on with the usual calendar. As I entered our PICU room again, my emotions back in check, Jörg stood up and announced he was going downstairs to get some hot chocolate from the cafe. "OK, but there's a Santa down there," I warned him. He looked at me quizzically, clearing not understanding what I meant. A little embarrassed, I explained, "He made me cry." "Santa made you cry?" I nodded, beginning to realize that perhaps my warning was a bit unnecessary for someone not awash in PMS hormones. Jörg cocked his head and gave me a concerned look, "Do I need to beat him up?"

Sunday, December 18, 2005

not enough content for a title

I am so enjoying reading over the songs suggested below. Some of them we already own, and I will just have to send Jörg on an expedition to track the cd's down when he gets home. Keep the suggestions coming! I'll keep checking the comments below. I'm going to have a very good time putting together a playlist for Anni's total relaxation and enjoyment. Julie has sent me an iPod to put this music on and, unlike the little mp3 player I'm currently using, it includes the cord to hook up to Jörg's laptop. So I'll be able to transfer music on CD over to the player. And, again unlike my current player, it will play music from iTunes. So I really should be able to make this playlist happen. Plus some of you have been asking again for our address, so I thought I'd just add it over on the sidebar so it doesn't keep sliding off down the page. It's the address at the Kohl's house, since we sometimes shift between rooms at the hospital. Today I wrote a little manifesto outlining my ideas for optimizing PICU nurse/parent relationships. I just never quit. Drop me a line if you're a medical frequent flyer parent and would like to have a copy or add your own suggestions.

Saturday, December 17, 2005

aural therapy

So how about sending your suggestions for songs you think Annika would enjoy hearing and find soothing while she's on the ventilator? Songs that remind you of her? Or songs that you love yourself and would enjoy passing on to a 5-year-old who falls in love with music so very competely? Don't worry about the lyrics needing to be uplifting or inspirational (although we've nothing against inspiration around here) - the girl goes for the dramatic and the melancholy, perhaps even more than the sweet. It'll be her personalized playlist, and I can print out the song titles, and note who passed the song on to her. I love this idea. So click on the comment button and suggest away.

just because it's another day

I'll post. But there've been no changes. Our nurse described her condition as "critically stable." But we have passed the crucial 24-hour mark, when we would have had some indication if the infection in her tummy still had the upper-hand. Although she has not been fever-free, and there is still blood in the stools that she passes (uncomfortably), she has not required any more blood or extra fluids. The dressing on her tummy is a bit gory with infected fluid draining out of the unclosed wound and soaking the pads pressed against her side, but when she awakes briefly from the sedation she shakes her head when we ask if she hurts. The doctors have had to go up on her ventilator support, but no one is surprised about that, nor the fact that her morphine and versed requirements have skyrocketed. Her main issues right now are:
  • anger at awaking to find a breathing tube down her throat (and taped so thoroughly her mouth is nearly completely obscured - I guess her adventure in self-extubation was duly noted back in the O.R. For extra security, her arms are in immobilizers so that she cannot bend at the elbow to reach the breathing tube.)
  • itching, the morphine and dry air are likely culprits
  • a nearly irresistible urge to roll over. She's never much for sleeping on her back, and having a tummy full of fluid does naturally predispose you to roll over and relieve the pressure on the back. Obviously, though, a 12-inch wide open incision across your belly means back-sleeping is the only option. The nurse yesterday arranged a super-cool airbed for her, which is supposed to help avoid pressure points and offers the added bonus of adjustable temperature and built-in weight scale. She still struggles to turn over, though, and I'm not sure how much sense our attempts to calm her and explain the situation make through her morphine/versed haze. At one point I commiserated with her aloud, "Your tummy's getting better, Annika. But it's really hard work getting better, isn't it?" To my surprise, she nodded her head vigorously in agreement.
Most importantly, though, her doctors are all very pleased with her condition right now. I toyed with the idea of driving home after Jörg returned today with his exams to grade. Since she seemed to be doing well, and the plan was to keep her completely asleep, we thought maybe this would be my chance to get back home to see Frankie, engage in some therapeutic cat-petting, grab some clothes, and generally reassure myself that life outside the hospital was puttering along as usual. But of course, Annika, bursting with energy in her usual daily life and then confounding her medical team by sitting up and playing in bed despite a massive abdominal abscess and a perforated bowel, is never easy to keep sedated. Around 5 a.m. she started thrashing and reaching for me when she heard my voice. She settled down again briefly, only to have another fit, longer this time, at around 10:30. So I will stay, since I cannot stand the thought that she might awake, confused and looking for me, and not be able to hear me respond to her. So more watching Annika breathe, now with the smoothly regimented regularity of the ventilator. The ventilator is such an amazing machine, but it tempts me into thinking about my own breathing way too closely. I put my hand on my chest and feel it rise and fall, and somehow it no longer feels like a natural activity. It seems exhausting, all this continuous effort of pushing in and out, over and over without fail. And this leads to that kind of vertiginously weird feeling that I remember vividly from the year I began kindergarten, when I became so self-conscious that I could make myself dizzy simply by imagining myself sitting somewhere behind my eyes, like a little mini-Moreena homunculus completely separate from the body that everyone else saw. Yes, reliving kindergarten memories is a clear sign that some mental distraction is needed before I burn a hole through my belly-button with my own x-ray vision. Usually there is very little time to read in the hospital, given that Annika might gently be classified as "highly interactive," even when confined to bed. I could use this time to catch up on reading my sidebar links, and finding new links to add, but there's no internet connection in this PICU room, where I'm now writing on Jörg's laptop. So last night I blazed my way through all the New Yorkers that Jörg brought from home, and then I discovered this morning that Ursula Le Guin's The Left Hand of Darkness was in the Kohl's House book lending box, so now I'll finally have a chance to read a book that's been on my list for, oh, years now. We don't expect much happening around here tomorrow, but are waiting anxiously for the findings on Monday, when the surgeons will go back in to inspect her progress. So I may spend tomorrow improving my brain with Le Guin rather than indulging my navel-gazing with more entries contemplating ventilators.
And thanks to those who've sent cards and packages. If you've not heard back from me, it's probably because we haven't opened them yet. I've been planning on waiting until she's awake and feeling good enough to really enjoy the feeling of ripping open the envelopes and peering inside. So there hasn't been much opportunity since she's gone in for her shunt surgery on November 29, although she had been opening them one or two at a time in the days before she went back to surgery last week. Mostly I have just decided that Christmas will just have to be postponed this year. I've never been one for standing on tradition, anyway, so I'm thinking that putting up the Christmas tree when we get home in, say, February is a fine idea. Meanwhile, I'm going to put up a big sign on our door forbidding anyone to say "Merry Christmas" or anything along those lines, especially if she's still intubated. It's clear that she hears us, and I don't want her fearing that she's missing out on all the fun because of that damned tube. And thanks for visits from friends: Jennifer and Becca and Sarah are fantastic mothers, whose quick visits remind me of all those who understand too well life with liver disease, and a visit from Running2Ks after she donated blood at the hospital offered proof that the internet friends I've met here really do exist. Really, really. I hope I'm saying "thank you" enough right now, to my dad and my mom, who's been caring for Frankie and the cats; and my sister, who brought me a soft sweater in that way that says "love" and thrilled Frankie with her hugs and attention and voice that sounds so comfortingly like mine; and to the amazing doctors and devoted nurses caring for Anni round the clock; and for the lovely emails I've gotten, with personal stories intertwined with words of encouragement. So, thanks.
And, finally, Jörg received word, in a letter so laudatory that I'm going to have to send a copy off to his mother and father knowing full well that parental pride knows no age limits, that he has been accepted for tenure and promotion at his university. Whew.

Friday, December 16, 2005

all's calm

It's hard to know what to do for Annika right now. Because she is intubated and her abdomen, all the way across, was left open after surgery yesterday, the ICU doctors are working very hard to make sure that she is fully sedated. For the past couple of weeks, I've been crawling into bed beside her, turning myself sideways and scrunching up against the rail to give her the most space possible, while still offering her the shelter of my body. She's gone to sleep with her face pressed to my chest nearly every night that she's been in the PICU. But now there is no room for me beside her. The ventilator takes up one half of the bed, and her I.V. lines are pinned to the other side along with her N.G. tube (the tube that goes into her nose and down to her belly). At least she is no longer paralyzed, although they do have her arms in immobilizers to keep her from pulling another extubation trick. On the one hand, I'm hoping that she is completely unaware of all that's in and around her right now, but on the other I do hope she knows that we are here with her. Jörg is going home today with Frankie and my parents. He'll come back tomorrow with his final exams to grade, but Frankie will stay home. We're thinking about bringing Frankie back here for Christmas, although Annika will still be in the PICU. We long ago gave up on the goal of being home for Christmas, but our new hope: conscious for Christmas. I spent last night with Frankie while Jörg slept in the PICU with Anni. It was great to spend so much time with my little one, and to have her fall asleep on me, pillow mama. My dad made her some spaghetti for dinner, and we sat around the table watching her eat. After she had finished her bowl, and snagged some from her Grandpa's plate as well, she looked at me thoughtfully. "I want to go home," she said, enunciating each word carefully, as if she had been rehearsing the sentence in her head to make sure it was well understood. "That's a great idea!" I enthused, "Daddy will take you home tomorrow, along with Grandma and Grandpa." She absorbed this news, nodded her head, and then clarified, "An you come wis me?" "No," I shook my head sadly, "Anni is still very sick and I need to stay here and help take care of her." "Nonny needs medicine?" "Yes." "Where is Nonny?" "She is sleeping. In the hospital. She needs to rest to get better." "OK," she nodded decisively. "I go sleep wis Nonny." And so more explanations that she listened to with her much too serious face. It's hard to say how much she understood, but I tried anyway. So right now I'm watching Annika laying in her bed breathing in rhythm with the ventilator. The night nurse took the opportunity of heavy sedation to wash her hair, so her bedhead dredlocks have been replaced with lovely curls. The little hippie refused all our entreaties for cleaning and combing that matted mess last week. We're listening again to the selection of sleeping music she chose for my mp3 player. Unfortunately, we never foresaw a long-term ICU stay, and so we only put 25 minutes of quiet music in the lullaby folder. The rest of the memory in the player is devoted to the fun music that allows us to turn our hospital room into a "party room," as Annika calls it. Right now the goal is relaxation and sedation, so I just keep playing those same 25 minutes of quiet music over and over, standing up and backing it up to the beginning every time it cycles through, since our cheap model doesn't allow an automatic repeat if you've organized the music into folders. I know some of you have been asking if there's anything we need, and here's something that would be handy. If anyone has a cheap mp3 player (I think Amazon has some with 128 MB for $30 or so) and access to some lovely acoustic music to put on it and wouldn't mind loaning it to us for the PICU stay, that would be just wonderful. I could very easily drop it back in the mail for you after we're out of here. Thankfully, most of our nurses enjoy the music, but the same 25 minutes of music over and over can drive anyone batty. And then there's the fact that Annika, with her well-developed dramatic streak, chose some rather depressing songs to include in her go-to-sleep playlist, which can leave me rather teary. Here's the playlist she selected as the most soothing: "Tell Me Why" Pat Benatar "Gartan Mother's Lullaby" Meryl Streep (I know! I was surprised too, but she has a lovely voice) "Reason to Believe" Kelly Willis "I Love, I Love" Dar Williams "Family" Dar Williams (a cover, Cliff Eberhardt?, bring on the hankies) "A La Nanita Nana" Tish Hinojosa "Be Still My Soul" Paul Schwartz (Lisbeth Scott, vocals) "Prayer in Open D" Emmylou Harris "Last Night" Lynn Miles I love her taste: she goes mainly for the acoustic stripped-down sound (So, for instance, she only really loved "Be Still My Soul" on that Paul Schwartz album, and it is certainly the least electro recording of the bunch), and she is a sucker for a lovely melody, particularly those melancholy minor-key ones. We certainly would have included the Sara Hickman Newborn songs, had she not just been listening to that CD at night before we came, and decided to change it up a bit.
So now we just wait patiently and try to keep Annika relaxed and comfortable. We watch for signs of healing, and hope nothing else goes wrong. The doctors, at least, are all smiles and relief that they finally have a known problem to address. I usually share a cup of tea in the afternoon with our PICU neighbor mom, and we compare notes and cry a little together. Then we head back to our glass-walled rooms and hold our children's hands and give thanks for hope and the warmth of little fingers.

Thursday, December 15, 2005


I just ran a spell-check on my last post below, and my Mac's TextEdit program suggested "Superman" instead of "Superina." As a very well-known and respected transplant surgeon, I doubt that Dr. Superina needs any such ego-boost. But just to be sure he stays grounded, Annika wanted him to know that, after her last surgery, her surgical staples were placed unevenly. Totally unacceptable. She is hoping that the next round of staples shows a more professional level of symmetry and spacing.

she's full of surprises

As late as half an hour before Annika was wheeled into the O.R. today, her surgeon was debating with himself whether or not it was a good idea. It's fascinating to watch the back-and-forth thought process of someone as high-powered as Dr. Superina, although also, as a parent, a bit disconcerting. The fact of the matter was that she did not look like someone who was suffering from a massive abdominal infection. She had spent the morning dressing and undressing her tiny Ariel doll in her many strange little rubber outfits, and discussing the various shapes of cookies she would eat "when her tummy was fixed." But the results from interventional radiology yesterday had them worried that perhaps they were missing a large infection that could turn very dangerous. Then there was also the fact that the results from the lab had come back, and the version of E. coli that had been cultured from her abdomen was susceptible to pretty much any kind of antibiotic. In fact, this bug was so weak that even a mean look from a lab worker could kill it off. While it's good news that she didn't have some sort of super-bug, it was worrying that the high-powered antibiotics that she had already been on for a week hadn't cleared the infection. This most likely meant that the infection was located someplace that the antibiotics just weren't reaching. But on the other hand, Dr. Superina wasn't looking forward to going back into her abdominal booby-trap and working his way through all those newly-formed adhesions without knowing for sure that such a drastic measure was called for. Finally he just threw up his hands and said, "OK. Let's take her back." Annika engaged in her usual procrastination tricks to delay having to leave her room, but overall she took the news relatively well as we explained to her what the doctors had to do. They wheeled her off to the O.R. after I leaned down and sang "Twinkle, Twinkle Little Star" softly into her ear, which is our new way for me to "put my voice inside her head" in case she gets scared. Clutched in her left hand was her new lucky stone, a smooth resin-encased organ donation ribbon that she got in a package from Riley and Shelby. The doctors told her that they would put it in a bag that they would keep by her head throughout the surgery. A little over an hour later, we saw her PICU nurse running by, stopping just long enough to report, "She has a huge abscess and will need to stay intubated." Annika was rolled out of the O.R. 10 minutes later, and we had a chance to talk to Dr. Superina. Again, we saw that look on his face that said he just couldn't believe how difficult our little girl can be. She did indeed have a very large abscess in her abdomen, and they also discovered that her bowel was perforated. Because of the massive infection, they were unable to close her abdomen back up again. And the hole in the bowel will likely be very difficult to close. They are planning on taking her back to surgery on Monday to change the packing in her abdomen and to check whether or not the suturing of the bowel has held or not. If all goes well, they might be able to start the very slow process of closing her back up again in a week, but it's going to take a long time to accomplish. Meanwhile she will need to stay on the ventilator and be paralyzed for her protection. Since she is going to have an open abdomen for a while, Jörg is going to take Frankie and my parents back home tomorrow. We'll need to be careful about minimizing her exposure to germs until she can be closed up. And it's not like she's going to be up for a lot of company for a while, anyway. I'm awfully glad that we took Frankie and my mom back for a visit with her before they took her back this afternoon.

back to surgery

Annika is back in the O.R. right now. After the fluid tap in interventional radiology yesterday, it was discovered that she has yet another type of bacteria (not yet identified, but different than the earlier discovered E. coli) infecting her abdomen. So they are going to open her abdomen and attempt to clear out all the infected fluid. We are nervous about her going back into surgery again, as it is never very easy for the surgeons. The surgeon called this "rebooting the computer."

Wednesday, December 14, 2005

figuring it all out

As Tabitha reminded me in the comments, a lovely picture of Frankie and Annika from last Christmas graces the cover of the latest issue of Parentland magazine. I haven't seen it yet myself, since we've been in the hospital since it came out. I read the on-line journals of several of the contributors to this magazine, though, and love their writing. Highly recommended all around. And for those of you in Chicago, Children's is having a blood drive this Friday. You can schedule an appointment at, using code 3308 to identify the Children's drive. Drop me a line if you're donating, and I can pop out of the PICU for a meet-up. Annika has certainly required so much blood, it would be nice to know that some is being given back with her in mind. I wish that either Jörg or I were allowed to donate. Otherwise, no change and no news. Annika is still bleeding, and still requiring transfusions on a regular basis. She is still fighting an infection in her abdomen, and the regimen of 3 intravenous antibiotics plus an anti-fungal does not seem to be having much effect. The bacteria has now at least been identified: E. coli (if you look at that link, the section pertaining to Annika would be the one labelled "intra-abdominal infections." This is not a contaminated food type of infection.) But one of the antibiotics she's been on for the past week should have already been clearing up the infection. So she either has some sort of super-bug version of E. coli in there, or they will need to go back to the O.R. to open her up and try to clean up all the infected areas. Obviously, we are all hoping to avoid another trip back to the O.R., as she has just gotten over the pain from her surgery 2 weeks ago. But even if they manage to get the infection under control, there is still no good explanation for Annika's continued bleeding. I did ask, finally, whether a retransplant was on the horizon, given that the shunt has not solved the problem of her esophageal varices. The surgeon's answer was both comforting and horrifying at the same time. No, he does not think a retransplant is likely, given how wonderful her liver looked when they opened her up. And besides, it's not clear that another transplant would clear up the problem of her bleeding varices, anyway. So, hooray for a healthy liver, but it's odd for us to be facing a problem that has no known solution. Facing a transplant is certainly no fun, but at least it offers the hope of healing. Right now, we are trying to get used to the feeling of just waiting and hoping that it all turns around, with no clear game plan. And I still haven't figured out if this is a better place to be, or not. Surely everyone agrees that she simply cannot go on bleeding like this. Meanwhile, Annika is trying to figure it all out, too. A few weeks ago, Annika was snuggled in next to me in the hospital bed. "Mama, I am so sorry." "Sorry about what, sweetie?" "I am so sorry that I fed Frankie the cat's medicine." I hugged her close and told her that, while that was a very bad thing to do, it was over now, Frankie was O.K., and we knew that she would never, ever do it again. Later it occurred to me that perhaps Annika was searching for something she had done wrong, some reason that she was being put through all of this. So when Annika, weepy from the leftover sedation from a procedure to pull fluid off her belly, cried, "It's all my fault!" I spent the next 10 minutes explaining to her that she had done nothing to deserve this. And, for once, the classic childhood line, "It's not fair!" was absolutely, undeniably true. Less the whine I wish it were, and more an understatement. (And, by the way, that was the great, untold story of Frankie's first trip to the E.R. Frankie, evidently, begged her sister for some medicine, jealous of the 15 pills she saw Anni take at various times throughout the day. Annika, always happy to oblige her sister, decided to give her Hepburn's thyroid pills. Normally, I keep those up in an unreachable cabinet along with Annika's pills. But on that unfortunate morning I had left them out, and a childproof cap is no obstacle for Annika. Upstairs hanging lights in the girls' room, I heard the commotion and went to investigate. I was pretty sure I had come upon the scene before Frankie had swallowed too many, if any at all. But there was no date on the bottle we had gotten from the vet, and therefore no way to count the pills and determine how many were missing. So off to the E.R. for a charcoal milkshake for Frankie.) So now I've been sure to remind Annika at regular intervals that none of this is her fault. Having satisfied this concern, Anni has now turned to trying to figure out our role in this whole mess. Last night she told me that I was supposed to tell all the doctors and nurses and everybody not to touch her unless she said it was O.K. for them to touch her. Obviously we are not quite living up to the parental role of protector right now for her. So more explanations, some of them acceptable and some of them met with the raised eyebrow and scrunched-up eye that says she's not quite buying it. Yesterday's sedation left her particularly willing to express her fears and concerns to us. One of the doctors here described the feeling of that drug as being something like "two martinis in quick succession." She cried, and clung to my neck, and really got down to the heart of the matter. "Why do these things keep happening to me? I want to be back to normal. I want to go home." I cried along with her, and I put her to sleep that night by curling my body around hers and whispering in her ear, "Annika is safe. Annika is safe. Annika is safe..." She drunkenly nodded her head and whispered, "safe," with me. Until she finally opened her eyes and said, "OK, you can stop saying that now. Goodnight." And then she slept the whole night through for the first time in weeks. But of course it's Annika we're talking about here, so it's never all tears and self-pity. She had been gifted a Barbie to sweeten the prospect of yet another trip back to interventional radiology, and she clutched it tightly in her hand as they wheeled her bed away. As they were readying the sterile equipment to begin the fluid tap, she held our her hand and asked me in a slurred voice, "What's this?" "It's your Barbie. That's Barbie as Elina. From Fairytopia." "Oh." She pulls the Barbie in close to her face and then back out again. "It's so BIG!" A few seconds pause, then she adds, "I thought it was a scrub brush." Somehow I doubt Barbie's manufacturer, Mattel, is going to run with that idea. Barbie as Princess Scrub Brush: Making the world a better place, one toilet at a time. She returned from interventional radiology 15 minutes later, fluid still sloshing about in her tummy. They were unable to do the tap because they couldn't get her to go under. "I don't want to sleep!" and she thrashed every time she felt the lidocaine-filled needle on her tummy. The radiologist, nervous at the prospect of inserting a large-bore needle in a moving abdomen, asked for more sedation. Finally, having used the maximum dose of sedation allowed without an anesthesiologist present, they gave up and rescheduled for today. She will be put out completely by an anesthesiologist. Or so they hope. Two hours later, to the amazement of her nurse, Annika was still awake and chatting, albeit sounding like a party girl at 2 a.m. the day after her 21st birthday. Cuddled up in the bed next to me, she put her hand over her incision. "There you are! My good friends. You went with me, didn't you?" Thinking that she had invented some more imaginary friends like her pre-surgery Esmerelda, I asked who she was talking to. "Oh, they're here on my tummy." Her finger began moving affectionately over each metal staple in her stomach as she rattled off a long series of names. Yes, the girl named the staples used to close her incision. I guess we're going to have to ask the surgical team to save them for her after they're removed. I'm not sure what kind of habitat surgical staples require. Maybe they'll be happy living in a zip-loc bag. So right now we're in a kind of PICU limbo. She's too sick to leave the unit, but no one knows exactly how to make her better. In an effort to reduce her anxiety, we have a sign on her door requesting that the doctors save the medical talk for out in the hall. Either Jörg or I go out with them when we talk things over. As the child-life specialist pointed out to us when we asked for ideas to help relieve Anni's stress, kids tend to listen to the medical talk, and just fill in the gaps that they don't understand with stuff from their own little heads. "And," she concluded, "little kids have all sorts of scary stuff, like monsters, in their heads that they use to explain things they don't understand." I can't say for sure that I've outgrown the monsters myself.

Monday, December 12, 2005

"shit" is totally devalued

through overuse around here. Annika's bleeding started up again last night, even though she is still on the highest dose of octreotide she has ever been on. She did need yet another transfusion of both whole blood and plasma, but it doesn't look like this one is going to be as bad as the last one. Still, we know that she cannot simply go on like this, and the question mark over all the doctors' heads is practically visible. At least they have finally gotten a positive hit on a blood culture, which will let them know what kind of infection they are trying to fight in her swollen abdomen. In the meantime, they have her nicely stabilized, and so I'm not in the panic that I felt last week. Our PICU neighbors, though, are in a much more painful and dangerous place. I know the family from the Kohl's House, and so we chat and share tea and coffee. If you're sending prayers or well-wishes our way here at CMH's PICU, be sure and include a thought for our companions on the other side of the glass wall.

Sunday, December 11, 2005

the healing power of...

DSC06521.JPG Frankie! Last night Jörg brought Frankie up to Chicago, along with my mom and dad. I practically ran to the double doors of the PICU to meet Jörg and Frankie. It was one of those happy tears moments. I took Frankie in my arms and held her tight against my chest, marvelling at how much her hair had grown and laughing at her new favorite phrase, "Hey, guys!" I brought her into Annika's room, and, to my amazement, Anni's eyes filled with tears, too. Of course, my first thought was, "Oh, no! She's in pain again." But Annika just held out her arms and said, "Hi, Frankie." After 3 days of Annika being completely non-verbal, except for the occasional "Please leave me alone! Everyone!", her voice was still hoarse as she launched into a conversation with her little sister. For her part, Frankie was not sure what to make of the all the tubes, lines, and monitors surrounding her sister. She perched in the bed next to Annika, wearing her serious hospital face. Anni, noting Frankie's reticence, asked, "What's wrong Frankie? Are you thirsty? Do you want a drink?" Frankie nodded a solemn "yes." And her sister, not having been allowed to drink herself for the past 5 days, asked the nurse to please bring a drink for Frankie. Anni handed the cup to Frankie, who took it with the care and respect usually reserved for high communion. DSC06519.JPG
Deciding to have another child after giving birth to one with major medical issues is not an easy call. If Annika's liver disease had been genetic, we definitely would not have done it. Even so, we still held our breath during the pregnancy, knowing that the odds were on our side to have a healthy child but fearing, anyway. And now we have our little Frankie, robust and healthy and full of sweetness. But I do have to admit that this ordeal has been even harder for me, emotionally speaking, knowing that I had such a young one still at home who was certainly confused by Annika's and my sudden and complete absence. Annika, too, missed her new little companion and constant fan club, which perhaps made this all harder for her, as well. But seeing them together again for the first time yesterday was a revelation. No matter what the difficulties, their love for one another is nothing but good for them both. The lift in Annika's mood when Frankie climbed into bed with her was nothing short of miraculous, and Frankie's great care and extraordinary gentleness with her big sister speaks of a maturity and empathy that is a marvel in a 2-year-old.
Annika's bleeding finally stopped last night. She is on the highest continuous dose of octreotide that she has ever been on, though. The plan is to start weaning her off the octreotide slowly and carefully tomorrow, hoping that she will be off of it entirely by Tuesday without the bleeding starting up again. The doctors are still trying to find the cause for her mysterious fevers. All the blood cultures so far have been negative, but they decided to change out her I.V. access lines anyway, just in case they were harboring bacteria. The plan was to rewire her central line (up by her shoulder), and to completely pull her PICC line (those are both large, longer-term intravenous access lines). Pulling the PICC line was not going to be such a big deal, but rewiring the central line is something that kids are usually sedated for. But because the sedation drugs seemed to be raising her blood pressure, which could pop a varix open again, starting another bleed, they decided to do it without any sedation. I convinced them to let me stay in the room during the procedure since they weren't going to use any sedation. The nurse and I started hitting the button for her morphine pump, hoping to take care of the pain of pulling the stitches and resuturing. She held wonderfully still as she and I were draped together under the sterile surgical towels, but somehow the wire slipped during the procedure, and she lost the central line altogether. So today she had to go back to Interventional Radiology and get a brand new PICC line placed, and the old one pulled for culturing. They also tapped another suspicious pocket of fluid, still trying to find the infection that is causing her fevers. They also pulled her N.G. tube today, much to Annika's delight. That and a good night's sleep last night (finally) have made today a much more pleasant day all around for our girl. I know I have promised to put an Amazon wish list up for Annika and Frankie, and I will. But also know that, despite everything that's been happening, and despite the fact that we have been getting worried that Annika is becoming depressed and anxious (her uncharacteristic silence, and also she's begun picking at her lips and skin until they bleed, evidently a new nervous habit), we also know that Annika at least has the emotional support of a family that is able to be with her all the time. Which is probably what does her the most good right now. I'm sure that once she starts feeling better, the allure of all-mommy-daddy-all-the-time will start to wear off, and that's when the shiny plastic things will be the real mood boosters. And, of course, feeling Frankie fall asleep on my chest and watching her jump wholeheartedly into snow drifts is my anti-depression drug of choice right now. She's done wonders for my mood, although we are frolicking in the shadow of the hospital, and I know that I'm missing half of my little snow play team. DSC06525.JPG

Saturday, December 10, 2005

not quite 1000 words

I haven't taken a picture of Annika since the surgery. I haven't taken any pictures of her on the ventilator, or shadowed by an I.V. pole decorated with bags and tubes and the festive lights of triple-line pumps. I haven't taken any pictures of her hugely swollen belly, or the large dressing that still covers her new incision, which follows the scar from her previous transplants. And I will not take pictures of her now, with the greatly detested N.G. tube snaking across her cheek and streaked with blood, which is being used to monitor her bleeds more closely. I will not take pictures of her little belly button, which is ringed red with the pressure of the fluid stretching it taut, but resolutely still an inny, much like my own belly button, when the pressure against it was Annika's own unborn baby self. I haven't taken pictures of her curly hair, rubbed angrily into the hospital pillowcase for the past 9 days until it has formed into little stalagmites rising perpendicular from her scalp, the gravity-defying dredlocks of a Trollz doll. I took pictures, many pictures, when Annika stripped naked and crawled up into the bathroom sink, taking advantage of the view afforded by the large bathroom mirror to see how she would look covered in 3/4 of a bottle of Vaseline Intensive Care lotion. I found her giggling as she slipped and sloshed greasily around the cool porcelain basin, unable to lift herself out of the slippery mess. I took pictures when she took the giant plastic jacks that she had "won" for holding still for an I.V placement (piece of cake), and carefully stuffed one in each of her nostrils and the openings of her ears, proudly showing off the look like it was the new facial ornamentation for Tribe Annika. I took pictures of her the first time she dressed herself, with her underwear jauntily displayed over her pants. I took pictures of her the first time she fed Frankie, yogurt dripping fetchingly from Frankie's chin and smeared up Annika's arms. Somehow these hospital images don't feel like the kind that should be placed in a photo album alongside the pictorial record of all those firsts and all those amusing antics of childhood. But I know this makes little sense. For one thing, I know of parents who have taken moving and beautiful photos of their children at their most physically vulnerable, pre- and post-transplant. For another, I have devoted more words to describing the hospital life and transplant experience than to any other topic. So it's not exactly like I'm letting these moments pass into amnesiac oblivion. I wonder what Annika, the future, mature Annika, would want or need me to do. Jörg brought me some magazines from home to pass the time while Anni sleeps. In last week's Newsweek, the My Turn article was written by a mother describing her efforts to reconnect with her teen-aged son, and to make sure that his typical teen feeling of carefree invincibility was tempered by a respect for both the majesty and the frailty of life. Will there come a day when Annika will want to see photos of her younger self with tubing radiating from her body in all directions, while the delicate tissues of her lungs inflate and deflate with gentle puffs from a bedside machine? Will there come a day when those images might teach her the lesson that life is both fragile and remarkable? Maybe I should just take a few pictures and then put them in an envelope marked, "Annika: for when you're ready." Or perhaps more accurately, "Annika: for when your mother is ready."

Friday, December 09, 2005

the varices strike back

So the results of the scope are back and to everyone's shock, she has 3 new esophageal varices. Big ones. Annika's surgeon, Dr. Superina, came to the O.R. to view them himself, having expressed disbelief even when the doctors called him during the scope to let him know. In a way we are relieved that there is nothing wrong with her intestine and that there is not some new problem that she has to deal with. However, this does mean that something is not working with the shunt. Either the shunt itself is not relieving enough pressure, or there are some hidden veins that the shunt is not taking care of at all. If this all sounds weird and speculative, that's because it kind of is. I don't think anyone is going to talk to us about strategy until next week. I fully expect to hear the word "retransplant" mentioned in the first five minutes of that meeting. But, again, I could be wrong. Meanwhile, I am wondering if we will be leaving the PICU any time soon. In the good news department, I have heard that there is a spare room at the Kohl's house next week and I'm thinking of getting my mom to come up here with Frankie. Originally we were going to wait until Annika was out of the PICU and a little more mobile, but I'm not sure when that will happen. I've been gone with Annika since Nov. 14, except for that all too brief day and a half at home. Had I known that our stay at home would be so short, I would have spent much more time snuggling Frankie and much less time doing laundry and painting bugs on the girls' bedroom walls. So I've got some catching up to do with my youngest. Please know that I am reading all the comments, and I love reading them. It's good to feel the positive energy directed Annika's way, and reading so many well wishes helps my mood, too. So, thanks.


I spoke with Moreena today, and she is still waiting for different news. She appreciates everyone checking in, and she'll give an update later. For those who asked about care packages, the Kohl's House address is still good, and she's thinking about putting together a wish list. More news later. Thank you, everyone! --written by Running2Ks

Thursday, December 08, 2005

8 sentences for tonight

The doctors postponed the scope until tomorrow, hoping that the bleeding will have stopped by then and the infection will be under control with the new antibiotics. She is still bleeding, but more slowly since they started the octreotide, a medicine which slows blood flow to the G.I. tract. A few alternative theories have been bandied about, but somehow I know with that paranoid intuition of mine that is, I must say, frequently correct, that she has more varices and that we are going to have to talk about another transplant soon. Even if I'm wrong about that, none of the alternative theories are exactly delightful(recurrence of PTLD, a CMV infection, Crohn's disease). We will not be home for Christmas. There is the most beautiful snow falling on Chicago tonight. Annika said it would be time to go home when it snowed. For the first time, I'm glad her bed does not face a window.

no title for such a crappy-ass night as last night

This post is going to sound dire. Sorry. But I'm scared. Annika's bleeding increased last night. She went for a tapping of the fluid in her abdomen yesterday (the pocket they tapped was not the source of her infection). And then went for a CT to look for other possible fluid pockets that could be the home for the bacteria. After the CT, she sat on the bedside commode and filled the bucket below with blood. Then she leaned over and vomited even more blood. Repeat scene 1 hour later. After that, she stooled blood every hour or two through the night (continuing this morning). They put her on a rapid transfusion of blood, but her hemoglobin was still dropping alarmingly after two units of blood (and two of plasma to help her body clot off the bleeding) had gone in. Around midnight they switched her to a new combination of I.V. antibiotics, hoping to curb the infection that is making the bleeding worse. Finally, after the third unit of blood, her hemoglobin stabilized and then went up. This morning she is feeling much better, but still bleeding. The new theory is that she had not only varices in her esophagus, but also in her intestine. The Rex shunt, which had been planned, would have taken care of both kinds of varices, but the shunt she got instead may have actually increased the pressure on those lower varices. I have no idea what they are going to do to relieve the pressure on those varices. Add to that that the CT showed fluid accumulating around her heart and that the X-ray showed the areas of collapse in her lung worsening, and you get some shaky hands and gray hairs a-poppin' out everywhere. I know Running2Ks had suggested giving blood for Annika (she has had now 9 transfusions over the past few days). I think that is a wonderful impulse, but would instead encourage you, if you feel like doing something, to simply give blood at your local Red Cross. Obviously, increasing the blood supply for everyone helps out Annika, too. Running2Ks also offered to post for me, and I'm adding her to this blog so that she may do that for me. OK, so I am completely wired on coffee, no sleep, and nervous stomach acid. Thus the possible disjointedness and gaps in the story. But, it bears repeating, Annika is doing well and is stable. She has already informed the doctors that she wants ice cream tomorrow. I don't see that happening, but I think her demand is a good sign that she is still going strong.

Wednesday, December 07, 2005


(again, written yesterday (12-6), but posted a day later. She is currently having the fluid removed from her tummy and a drain placed in IR) I have heard, in the kindest way possible, that perhaps it's all been sounding a bit dire around here. When, in fact, we think that she is actually doing very well. Very sick, yes, but also dealing with it amazingly well. Part of the problem is time. When you only have 5 minutes and your mind is actually still mostly up in a tiny room on a different floor, you tend to stick to the facts, and really only the facts that are most needling. There's no time to put those facts in perspective, or into a context that might allow a better glimpse of the big picture. And then there is also a strange feeling that overcomes me every time I leave Annika's room to go post an update. The nursing staff has been practically chasing me away to go take a walk, take a shower, or eat a cookie. I'm pretty sure that they have all been briefed on the studies that show that parents who refuse to leave their child's hospital room eventually become stark raving lunatics. But it's also when I leave Anni's room that I start to feel the saddest, the most worried, and the least pulled together. It's like this: you know how, as a parent, you can't help but sneak in to your child's room at night to watch them sleep? Eyes closed and movements stilled, you finally have a chance to see all the little details that escape your notice during the rush of the day. You see how her eyelashes form a perfect curve just above the cheeks, and that those lashes are perfectly spaced and curl up in the most perfect decorative fashion, wonderful as the curlicue on top of a soft-serve cone. And then you notice her little seashell ears and that nose so inexpressibly wonderful and, if it weren't for the fact that disturbing her sleep might have seriously negative repercussions affecting your own chance for rest that night, you might crawl in to bed next to her just to match your own breathing to hers, marvelling at the strength moving her chest up and down so evenly, inhaling that scent of sleeping child for a few moments longer. Then, as you are leaving the room, you turn back at the doorway and, suddenly, you don't see her chest moving anymore. It's crazy, but you're gripped by a choking fear that leaves your reasonable mind scoffing. And you know that it's only because you've just been right next to her, staring at her so closely that that movement of breathing seemed so gigantic. At a distance, watching someone breathe is never so momentous. Of course you don't see her breathing from so far away. But you go back, every single time, tensely scanning the blankets, searching for that upward movement that proves life is still as it should be. So right now I am in something like a state of constant blanket-watching. Surely I am staring at the monitors that display her vital signs way more than is healthy. And if I match my breathing to her fevered pant right now, I hyperventilate. But still there is so much to marvel at, and I see that she is still strong, despite whatever it is that is going wrong. Annika was moved out of the PICU and back to the regular transplant floor on Sunday evening, sooner than anyone had expected. Tonight, Tuesday, we are back in the PICU with a suspected bacterial infection. The source of her bleeding is still unknown, as her shunt is definitely still working. Tomorrow she will go to interventional radiology and they will drain the fluid in her belly that has been making breathing so difficult for her. It's possible that the fluid will simply reaccumulate after this procedure, but the doctors are suspecting that the infection is stemming from that fluid.

Tuesday, December 06, 2005

shit shit shit

It's our new theme around here! Yes, Annika is bleeding again. Yes, that's what that painful 8-hour surgery last Wednesday was supposed to fix. She had an ultrasound this morning to see if her shunt had clotted or narrowed or otherwise was no longer working as well. I still haven't heard the results, but I suppose I should by this afternoon sometime. Meanwhile, they are beginning to put her on blood products to help her clot more, so that her bleed does not become dangerous. On the other hand, if they get her to clot too much, she could clot off her brand, spanking new shunt. Jörg needed to go back home to teach his classes this week (an income and insurance are required to keep up all this fancy medical footwork going). But this means that I don't have much time to slip down here to the hospital computer lab to post. Obviously, I don't want to leave her alone when so much is uncertain and a bit scary.

Sunday, December 04, 2005

a donkey on the head

It turns out that the number of nights I can go without sleep without experiencing total emotional meltdown is 3. If I had written my last update on Friday afternoon instead of that evening, it would have been all upbeat, I promise you. Annika was really looking great during the day. Then the afternoon came and she began hurting and her hemoglobin plummeted and I was worried about bleeding and having to send her back to the O.R. I think the fall was harder because she had looked so good during the day. After such a great day, the IV pole next to her bed had filled rapidly as the doctors kept adding to her regimen. Soon her cluster of IV pumps was reminding me unhappily of her post-transplant times, with their long, hard recovery period. I was starting to think she would have to spend another week in the PICU. When a code was called again that evening in the unit, I had a few tears for the child I didn't know whose hold on life had suddenly become so precarious. That night the poor nurse who was given care of Annika had to deal not only with Annika and her complicated schedule of 50 gazillion IV med's, but also a mom who was clearly a donkey on the head, as Annika would say. I got so upset with the nurse that I refused to abandon the lawn-chair-like seating by her bed for the fluffy-down-mattress-like-in-comparison fold-out chair across the room. Neither Annika nor I got much rest at all that night. Jörg was supposed to leave for home Saturday afternoon, but once he recognized how very donkey on the head I was, he decided to stay for another day. I slept 2 hours that morning, and another 2 that afternoon in the room, my dreams mixing weirdly with the conversations of the doctors and nurses stopping by to check on Annika. Jörg, meanwhile, kept watch on Annika, also upset with how her condition seemed to have deteriorated from the day before. He had to wear a mask the whole time he sat with her, as he had developed a sore throat the night before. We were pretty certain that it was just the dry air and stress, but didn't want to chance passing on a cold to her. That night I was determined she would get some good rest. At 9 I turned on her current favorite go-to-sleep song, Be Still My Soul. This was a song that I put on the photo slideshow memorial I made for my Aunt Pat's family, and Annika fell in love with it on first listen. I can't say that the lyrics are my favorite for listening to in the PICU, not being much in the mood for reconciling loss right now, but it put Annika in the most blissful state of relaxation. New Age music, morphine, and the humidifier on her nasal cannula bubbling zen-like behind her bed, she drifted off to sleep. Through the night, she lost more tubes. In typical Annika fashion, none of them were removed on doctor's orders. At 10:30, I awoke to see lifting her urine catheter in the air, the large tube connected to the catch bag was caught between her toes. I untangled the tube from her toes, but a few minutes later the nurse and I realized that Anni had broken one of the connections on the catheter. "Wow. I've never seen that happen before," commented our nurse, a long-time PICU veteran. Thus was the urine catheter removed. Then around 4a.m., Annika pulled her nasal cannula off her face, apparently still asleep. Amazingly, her oxygen levels stayed around 90%, so the nurse just left it off. So I'm hoping for a good day today. Jörg is leaving as soon as I return from doing some laundry (it's in the dryer now). And I hope we'll be out of the PICU and back to the regular floor perhaps tomorrow.