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.

Tuesday, January 31, 2006

jinx!

No sooner had I hit the "post" button on my last entry than Annika woke up crying and radiating heat that I could feel before I even touched her forehead. We went to the E.R., returning home at 3 a.m. with no explanation but reassured it was nothing critical. Two days later the fevers continue, and she now has such horrible pains in her right leg that she has once again stopped walking. So we're back to Chicago where she will be admitted. It's possible the leg pains are just from over-exertion after such a long time of disuse. But they want to make sure she hasn't developed a DVT. Also, they're going to check into the possibility that she has a touch of pneumonia, which was one possibility the E.R. doc suggested.

Sunday, January 29, 2006

prodigal blogger returns

I guess the vacation from the hospital turned into an internet vacation, too. But have you ever taken a vacation and thought to yourself, "I could live like this. Everyday. I really really could."? But then you start to wonder if maybe you would eventually take all that sun and sea and loveliness for granted, and find yourself vaguely dissatisfied once again. Just because that's exactly how perverse you have become in your need to whine, every single day. That the umbrella in your cocktail is annoyingly gauche. That the sand from the beach irritates the space between your toes. That the sun is unrelenting and is it really too much to ask for a little cloud cover every few days? And that the chocolate on your pillow every night makes so little sense because haven't you always already brushed your teeth before climbing into bed? Well, then, this is the post for you! So I meant to post some sort of update so many times, but it felt like some irritatingly yappy little poodle had taken up residence in my soul, and every time I sat down to write all that came out was so much yap, yap, yap. Shudder. For instance, when we were preparing to leave the hospital for the Kohl's house, all I could think of was the fact that there was some sort of screw-up with Annika's labs on Thursday. So the resident proposed that she have some of the labs done that morning and the rest (the time-sensitive ones) be done the following morning. And I was going to rail on about the fact that all these years post-transplant I have never had to ask Anni to be poked twice simply because I couldn't get my act together enough to get her to the lab on time, and here we were inpatient in a hospital with loads of people in blue jackets running around with blood draw supplies and the very lab to run the results in the basement just 6 floors below us, and somehow they can't work the schedule to avoid two sticks. But instead I just found our nurse and told her to beg whoever she had to in order to get a phlebotomist up to our room. Soon. And I made a back-up plan to steal a wheelchair and roll her on down to the lab myself to get the labs drawn all at once. All of them. Two sticks, my ass. Luckily for all parties involved, plan B did not have to go into effect. But, really, how silly is it to obsess over the number of needle pokes when the big picture is blinking right in front of me: LEAVING HOSPITAL! OFF TO KOHL'S HOUSE! PARTY! WOO HOO! And don't even get me going on the diplomatic intricacies and persistence involved in getting a lousy packet of Carnation Instant Breakfast (vanilla, please) to the girl who, in the past 6 weeks, lost 8 pounds (or nearly 20% of her body weight, and that's not counting the fluid weight she lost from her highest weight in the PICU). So we left the hospital and headed for the Kohl's House. We again borrowed the Gwyneth-Paltrow-Mega-Fancy Stroller to use for Annika, still without use of her legs. I had spent the morning hounding our poor nurse to get us discharged, even proposing she start paging (repeatedly) if the hold-up was lack of doctor's signatures on the discharge papers. But, of course, I still needed to get us moved in to the Kohl's House room, make sure we had groceries, and, very most importantly, fill the new prescriptions Annika was leaving on. The filling of the prescriptions can sometimes take some fancy footwork, and I needed all the time I could get to get the job done. What with the little poodle yapping away in my soul, and all. We got ourselves set up in the Kohl's House in record time, but Annika, unsurprisingly, had no interest whatsoever in accompanying me to Osco to pick up yet more pills to swallow. I bribed her with something or other, and we set off in the cold and biting wind. I wrapped Annika's bony little legs up in a blanket and wrapped a scarf around any skin left bare where hat and coat met, but she still shivered a bit on the way. We went to the new Osco, and I at least had the grace to be thankful that there was finally a pharmacy closer to the Kohl's House. But, of course, it took some 20 minutes of waiting and fruitless computer-searching and telephone transfers before the pharmacist could confirm that we were actually known to the company listed on our insurance card. At the end of those long 20 minutes, there was much regret expressed, but sadly the pharmacy didn't stock two of the three medicines and would Monday be soon enough? In blatant defiance of the "Please no cell phones" sign at the counter, I took my phone out and tracked down our long-suffering nurse from that morning to ask the resident to call in a prescription for just enough pills to carry us through the weekend from the hospital pharmacy, with which, unfortunately, our insurance company is not on speaking terms. And which was, also unfortunately, about to close for the weekend. About this time, Annika awoke from the little snooze she had been taking in the stroller. As was usual, she awoke crying and confused. Kneeling down beside her and hugging her, she clenched her legs and told me that she had to use the toilet. Now. I looked around for a sign and, seeing none, asked the pharmacist if there was a toilet she could use. "No, we don't have any for public use." Again, many regrets and all. I contemplated making a scene. Shouting at her impassive face, "Oh. OK. So she's made it through two transplants, repeated acute bleeds, a major shunt surgery which may well have not been successful given two subsequent post-op bleeds, 6 weeks in intensive care with an open abdominal wound, 1 month on a ventilator, for a lifetime total of 18 months or so in the hospital, 2 months of those with a machine breathing for her, but you think it's okey-dokey for her to JUST HOLD IT. Nice." Maybe making a scene like that would have made me feel better, but instead I just jogged back to the Kohl's House. On the way back I imagined the scene unfolding with my Big Speech (above). Then I imagined that it was my PICU buddy, Angela, in line behind me. Angela in real life would never roll her eyes at me, but she would have had every right. And then to follow it up with her own Big Speech, ending with a request for me to move it on and let her fill her own prescriptions. And then, because I can never stop once I get going, I imagined the pharmacist herself rolling her eyes at both of us and making her own Big Speech, because the world is oh so full of sadness. At this point you may be realizing why it's taken me so long to post, and perhaps even thinking that a few more days' time might have been well-advised, Little Miss Woe is Me Sadsack. Before leaving the hospital, I talked strategy with one of Anni's G.I.s, Dr. Emerick. She proposed scheduling the endoscopy to check out the state of Annika's esophageal varices for 11 days later, rather than during the next week. Her thinking was simply that Annika needed more of a break from the medical world than just a weekend would provide. If the scope showed more varices, despite the fact that her shunt appeared open on all the imaging, then we would be in for a serious excursion into the world of uncharted medical issues. "But," I had to ask, "if the scope shows no varices, would we be able to go home sooner if we went ahead and did it next week?" "Most likely. Yes." After that, there wasn't really much question. The Kohl's House is great and all, but it's not home. We scheduled it for the following Tuesday. I knew that if the news was bad, that I might regret not giving Annika one extra week to get back on her feet before pulling her right back into it all. But I was just that desperate to get back home, and I knew she was, too. Friday night, after all prescriptions had been secured, Jörg and Frankie and my mom arrived. The girls had a lovely reunion, with gentle pats on the head all around and much smiling. Saturday we had our long-awaited Christmas celebration. Michelle put up a tree in the upstairs lounge, and gave the girls some ornaments to decorate it themselves. We had to put a little chair beside the tree for Annika to do her share sitting down, since there was a more than halfway chance she would topple forward right on into the tree if left on her own feet. After lifting her arms to hang just a few ornaments, Annika was exhausted and we returned her to the sofa, where she supervised me finishing up the task. Her energy returned in enough time to open presents, albeit with perhaps a bit less gusto than in previous years. Still, it was an altogether satisfying afternoon. By Sunday it was time for me to get a bit depressed watching her attempt to stand, her legs quivering like a newborn colt's. With enough support under the armpits holding her up, she could move her legs in something that was close to walking, but with a stiff-legged gait that often resulted in crossed feet and collapses. And the crying. Oh, there was an awful lot of crying going on. And none from me, I'll have you know. Annika sobbed over every last little thing. Her milk was too cold. Or too warm. Her feet were too cold. Her socks felt funny. Her sister was touching her too much. Her sheet didn't feel right under her. It was too bright, or not bright enough, in the room. I suppose that I wanted to take her over to the Kohl's House and have the change of environment work magically to restore my old spunky Annika, with her fight and her humor and her general zestiness. Instead, I had something like a 5-year-old going through menopause on my hands. And it was all totally understandable. Jörg and I know better than anyone else all she has gone through, much of which I have reported here, but really not all, much as it may seem that way sometimes. If anyone deserves crying fits and hypersensitivity, it's her. But it just wasn't what I was hoping for, and I was starting to feel a bit bleary with it all myself. And then, of course, I was dreading the scope on Tuesday. Having had two acute bleeds from esophageal varices after an apparently successful distal splenorenal shunt surgery was just not very encouraging, even though she had not had a bleed in 3 weeks. "This will be our National Geographic Expedition scope," pronounced Dr. Emerick, emphasizing the whole uncharted territory nature of the procedure. Annika didn't protest heading back to the hospital early that morning, and she even requested that Dr. Emerick make a copy of the pictures of her throat for her. At least then she could see for herself what all the fuss was about. But then when they tried to give her the gas to put her to sleep back in the procedure room, she turned back into my old fireball, fighting and screaming. It broke my heart and gave me hope at the same time. Dr. Emerick came out to see me much more quickly than she ever had with any of the previous scopes, which should have been my tip-off, even if her huge smile of relief wasn't. "It looks just beautiful in there!" she exclaimed. "They're all gone, total decompression. Well, maybe one that you might call a Grade One, but nothing of what she had before. It's a sight to behold." And then she offered to remove Annika's staples while she was still asleep, and I remembered to let her know Annika's request that they also remove the tape covering her old JP drain site, as well, when she was under. And so that was it. Months of stress and worry and unexpected complications, and then they were just...gone. Later that afternoon I called around to give the news, and I was bursting with it, once it finally dawned on me that we could go home. That it was finally finished. By that time, the poodle in my soul was finally silenced and I probably could have written a very lovely and uplifting post, except for the fact that I was too busy packing and snuggling with my two girls who didn't want me out of a 6-inch radius at any point during the day or night.
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So a few days later I called Angela to check up on how she and Brad and Lauren were doing, and to give her our news, as well. Talking to Angela again, I realized how surreal all this was. That just a few weeks ago we were waving at one another through glass doors, watching each other's kids laying in beds in rooms crammed with medical equipment. And now we were going home with Annika, and they had been forced to arrange their own burial plots already to make sure that the space in the earth surrounding Matthew would be reserved for them to share with him someday. It was all happening too fast for the general terms "happy" or "sad" to be large enough categories to capture the feelings. On the one hand, I felt like I should be overjoyed that we were going home far sooner than anyone had anticipated. But it's not as if The Joy just comes over you naturally after such a long time spent in The Land of The-Very-Opposite-of-Joy. And how could there be something like joy when Brad and Angela had just let go of their own Matthew just days ago? How could there be joy, knowing that Annika may have to keep going through shit like this, all her life? But we all know that there will be joy. That there will come a day when Annika is laughing more than crying. That my posts will once more be posts like those of millions of other moms, full of poop and snot and cuddles and cute stories that are destined to be mostly cute to me, because they are about my own kids, the most lovably entertaining beings on the planet. So here's to the end of the hospital saga. May its continuation be a long time coming.

Wednesday, January 18, 2006

vacation, all I ever wanted

Come on, sing along with me. You know it's already in your head, so you might as well. OK, so it's not a real vacation, but Annika is going to get a Hospital Vacation. She came up to 6 west on Monday evening, and then lost both I.V.s in quick succession, which meant that she did a power-wean on the dilaudid. Today Plastic Surgery pulled her JP drain, and so she is now tube-less for the first time since mid-November. She's doing well off the dilaudid, and so the doctors are going to let her go to the Kohl's House for the weekend, just to get out of here for a few days. She still needs to have an upper scope to check out the state of her esophageal varices (her original problem, which seems almost forever ago by this time), so she'll come back early next week for that. If they are still there, even after her shunt surgery... Well, I just don't know. And it doesn't seem like any of the doctors know exactly, either. It seems like giving her a break right now is a good idea. Michelle over at the Kohl's House has offered to put back up the Christmas tree for her, and I think I'm going to take her up on the offer. With Frankie and Jörg and maybe even my parents on the scene, we could have a real blow-out party of a weekend. Today I bathed her and combed her hair and put her in the shiny, silky pajamas that my friend, Andrea, sent for her. She feels beautiful and so much closer to normal in non-hospital-issue clothes, you can just tell. We're going to go on a wheelchair ride around the floor (she can't hold her weight just yet), looking out windows and enjoying the feeling of open space.

Monday, January 16, 2006

More

Annika will be leaving the PICU soon. We heard those words first from one of the transplant surgeons here, "So," he asked Sunday morning, "what is keeping Annika here in The Unit?" ("The Unit", aka Pediatric Intensive Care Unit). The more cautious of the doctors listed a few reasons to watch her closely, but mainly the question was met with smiles exchanged among the 8 doctors gathered outside her room. And as we were readying ourselves to take our leave of this place, our long-time neighbor and PICU buddy, Matthew, was taking his leave, as well. But his departure was met with tears and that infinite sadness, almost too much to contemplate. It's that moment when you suddenly lose sight of your child in a crowd and your heart implodes at the same time that your entire body tingles with the feeling of loss, like a part of you that you absolutely cannot live without has suddenly disappeared. But then you twirl around, standing on your tiptoes for a better view, and you catch a glimpse of a familiar red jacket. And a few seconds later, with your child back beside you, you let out your breath and feel the dizziness in your head subside. I try to imagine that feeling going on for hours, days, months, years, and wonder how our gentle and lovely friends will be able to keep moving. To go back to a life without their precious one, the boy they fought for and cared for and loved so fiercely not just these past few hard months, but every day of his four years with them.
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A little over a month ago, after Annika had another bleed after the shunt surgery, back when she was clearly getting sicker by the day, she started showing signs of growing anxiety. We decided to insist that all medical talk be done outside her room, in order to avoid scaring her unnecessarily. But I always asked her, every day, if she had any questions about what was going on with her and her liver and all the hospital stuff. After all, I didn't want to keep Anni in the dark, but I wanted to be sure that the facts were given to her in a way that a 5-year-old mind could grasp. On that day, a little over a month ago, when I asked her if she had any questions for me, she nodded her head and gave me an earnest look, "Am I going to die?" The question, naturally, took me by surprise, even though I had been worrying about that very issue myself. Without even stopping to think about how best to formulate an answer, I blurted, "No! Of course not! You are not going to die for a very long time. You are sick now, but the doctors are going to make you better very soon and then we'll go home again." I didn't say "The End," but it was there, anyway. We called in the Child Life Specialist to give us ideas on easing Annika's anxiety and her growing unhappiness. I told her about Anni's question, and she replied a bit skeptically, "But does she really know what death means?" And I had to admit that I couldn't be sure she did. But the concept has certainly concerned her for many months now, ever since Aunt Pat's death, which she mourned in her confused way for weeks. For much of that time, her mourning was that of a child, typically and innocently self-centered. So, for instance, she mourned the fact that Aunt Pat, a famously gifted storyteller, would never be able to share her stories with Anni. And she cried over all the Aunt Pat singing and telephone calls and visits that would now never be a part of Anni's life. Just the week before Annika began the repeated bleeding that landed her in the PICU mid-November, and a few months after Aunt Pat's death, the girls and I were out in the front yard planting a new maple tree. It was fairly late for planting in the midwest, but I was encouraged by the unseasonably warm fall weather into purchasing the little tree at a bargain basement price, and hoping for the best. The girls, each with a plastic sandbox shovel, helped me dig a hole, loading the dirt into the wheelbarrow to use as backfill. Once we had the tree in the ground, we began refilling the hole until it was time to water gently to remove any air pockets. Anni enthusiastically volunteered to go fill the water bucket from the hose, proud of her ability to turn the outside faucet on and off. She hurried off while I stayed by the tree with Frankie, trying my best to curb Frankie's apparently irrestible impulse to jump into the hole with the little tree and fondle its delicate roots. Just a bit later, Annika ran back to me with her mouth pulled down unhappily and her eyes all shiny with tears. "What is it?" I asked, concerned. "It's a bird. And I think it might be dead. Or something." She pulled my hand to lead me over by the wild rose bush that grows in front of the house, near the spigot attached to the front of the house. Sure enough, there was one bird from the mourning dove pair with a nest near our house, the ones who spent the early morning hours of the summer cooing softly outside our windows. It lay there, right beside the brick front of our house, obviously dead. After ascertaining that Annika had not touched the bird (fear of disease rules our lives, I admit), I asked her to take Frankie to the backyard while I took care of the bird. Then Annika started to cry. "But now he won't get to fly around, or eat any more bird seed!" And just like that her sorrow shifted outside herself, as she realized that death also meant that the one who was gone would miss out on life, that sadness was not just about what Annika would miss. So, although I still wasn't sure that Annika really knew what "death" meant, I also knew that the same could be said of me. I did know that she grasped the consequences of death in heartbreaking simplicity.
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Matthew had had so many close calls here at the hospital, and he pulled off amazing feats of strength and resilience. Even as the list of medical problems assaulting his little body grew in number and severity, there was still the feeling that he could pull it off. Somehow. And, yet, eventually your rational mind knows that there are only so many assaults a body can take, no matter how strong the spirit and will. When I left Annika's room that morning for a cup of water, I saw the privacy divider up outside Matthew's room, and the crash cart parked outside his door. I knew then that Matthew was approaching that border, even before I saw the strained and exhausted face of his father in the hallway. If love and devotion were enough, Matthew would be home playing with his baby sister by this time. His parents, Brad and Angela, kept a constant vigil at his bedside, reading him stories and massaging his legs, even after he was on the ventilator and fully sedated. Even as he lay unconscious, they spoke and read and comforted him. Their strength, kindness, and compassion held firm throughout their roughest times and deepest worries. Just after Matthew's latest complication, I walked with Angela to the PICU waiting room, where her 2-year-old daughter, Lauren, was waiting for her, a meeting arranged back when Matthew was looking more stable, a meeting now so much more difficult because of Matthew's troubles. But despite the weight of awful worry practically pushing her shoulders down as she walked out of the PICU and into the waiting room, she opened her arms to Lauren unreservedly and closed her eyes into the embrace. Her mommy instincts undulled by the harrowing experience of the morning, she praised Lauren's bravery, giving her a love unshadowed by the fear we all knew she held. I know that Brad and Angela will make it through this, and they will be back to Mommy and Daddy for Lauren, whose inevitable questions may be more difficult than any others. I know this, somehow. Although my heart aches with the thought of the days ahead, always missing Matthew and trying not to let their sadness weigh down the happy leaps Lauren still needs to make. I don't know how they will do it, but my respect for them tells me they will. After Brad and Angela left the hospital today, arms empty and eyes red, I walked down the hall to the toilet. Passing their room, I saw the privacy divider had been taken down and the crash cart returned to its proper place. No codes were called for Matthew's last moments. He went wrapped in his parents' arms, quietly. I'm glad we're leaving this place, now that Matthew's gone. Passing his room and seeing his bed, empty; it's heartbreaking. But the sight of someone else's child in that room, another parent keeping vigil, would be unbearable.
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Of all the conversations I had with Angela over these past weeks, the most poignant one was the morning after Matthew had to be reintubated. He had spent a week off the ventilator, and hopes were high until the night before, when he coded and was put back on the vent. That morning, Angela told me with red-rimmed eyes about her fears, and how she had waited all that week to see him open his eyes and to hear him speak. "I was all ready to write down his first words off the ventilator," she told me. "I had my journal all ready. I didn't write down his first words when he was just a baby. I didn't write those words in a baby book, but I was so ready to record his first words this time... But he just didn't speak." That conversation was about so much more than just first words. It was about the regret of opportunities missed, a regret that haunts all of us PICU parents. For myself, I regretted spending my one precious day back home from the hospital between Anni's bleeds decorating the girls' room upstairs, all by myself, in a misguided attempt to do something special for the girls. I should have been playing with them, and hugging them, in that time that I didn't know was to end so quickly. Because who cares about paint? There's this country song (isn't there always a country song relevant to any sad conversation?) sung by, I believe, Tim McGraw. It's called something like, "Live Like You Were Dying." The song endorses a message that sounds reasonable enough: don't sweat the small stuff, and enjoy every moment of life. And I know that every parent can list things they would have done differently, if they were to be told that their time with their children would be short. But, on the other hand, this song also pisses me off a bit. I mean, think about it. If we were to really take this song to heart, where would we end up? We would all head off to a beach somewhere to chill out and feel the sun on our faces and listen to the waves and just enjoy the moment, right? Then, a few weeks later, we would all look around at each other with our sunburned faces (because who wants to be bothered with sunscreen if you're living like you're dying?) and wonder where we were going to come up with food (because who feels like harvesting corn if you're living like you're dying) and head back to our dark homes (because who feels like showing up to work at the power plant if you're living like you're dying?). Hey, thanks Tim. You just can't live life that way, not really. So Angela and Brad will go home and pull out the pictures they've taken of Matthew, and remember his life with them. I hope Angela never again feels regret about something as small as a first word. Life is more than just a series of moments. Annika was taken off the ventilator a week after Matthew went back on the vent. A few days later Angela stopped by, and saw Annika sitting up in bed with her eyes open. Lovely friend that Angela is, she cried with happiness to see Annika's eyes open again. But I know she was seeing what she wanted for herself more than anything else in the world, and we hugged and we hoped for Matthew, too. Annika's first word off the ventilator was "More." More: the grasping of life with both hands. But also, More: the very essence of grief.
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If you'd like to send a card to Brad and Angela or make a memorial in Matthew's memory, the information will be posted on Matthew's web page in the next few days.

Sunday, January 15, 2006

welcome back

Annika's continuing hallucinations and difficulties sleeping over the weekend led to a full neurological workup. First they did a quick EEG to see if any red flags popped up. The short study looked good, but they decided to do an MRI of her brain and a 24-hour EEG to get a better picture. For the 24-hour EEG they wrapped her head in white gauze, mummy-style, to hold the many rainbow-colored EEG probes sprouting from her head in place through the night. Annika was not happy with her new head gear, nor was she pleased with the computer monitor placed beside her bed, with black lines squiggling across the screen every time a thought entered her head. She spent the night turned on her side, staring blankly at the screen, as if she could wish it away with the force of her gaze. Snuggled beside Anni in the bed, I gazed down at the snowy turban on her head, smelling faintly medicinal from the hospital tape, which never smells like regular tape. At the center of the headwrapping a hole was left open for the wires of the EEG to come through and connect up to a black box left on the head of her bed. A few stray blonde curls escaped through this same hole, and looking down at those little hairs, which had wriggled free of the gauze trapping the rest of her hair, I felt a little sad to think that her problems might have spread beyond our perennial liver issues. I had no idea what to make of the angry scratches of black that covered the screen when Annika cried, as she had done most of every night, that everything was getting "covered in goo!" Still, she was keeping her eyes open almost all of the time, and she was requesting that I read to her nearly constantly. Our backyard neighbors had sent Annika a package with the first two Little House on the Prairie books, and she loved listening to the long, seemingly endless descriptions of the prairie grass and the changing light across the prairie and the laborious details of the work of everyday life back then. Of course, there are also some scary scenes in the book, with wolves and panthers and fires, and I hesitated to read such descriptions to a child suffering from terrorizing hallucinations. In the end, I left the scary things in the story, but I edited those scenes by skipping over some of the more dramatic detail Wilder lavished on her childhood nightmares, and thus got to her comforting conclusions more quickly, when Laura and Mary settled in at Pa's knee to reflect on the coziness of their lives together. Last night we settled in for a sleep on the least amount of drugs that Annika has been on since her bowel perforation and abscess were discovered over a month ago. Annika insisted that she was not sleepy, not really, but as I read the description of Christmas on the prairie, and wondered to myself if she has yet realized that she missed her own Christmas this year, I saw her eyes close and her breathing slow. Putting the book up safely above her head, I settled in beside her, not even daring to leave the bed to turn down the lights for fear of disturbing her. Nights in the PICU can never be described as peaceful, and we're neighbors now with an adorable baby boy who has a trach hooked up to his home machine, which has a beep designed loud enough to wake sleeping parents when there is some change in his breathing. Evidently being awake is disturbance enough to set off this sensitive machine, and there is no volume adjustment in recognition of the fact that, in the PICU, someone is always awake and watching. And, in addition to our neighbor's loud beeps, Annika's PCA (patient controlled analgesic, i.e. the dilaudid pump) beeps even louder than any of the regular IV pumps, as if it is worried that everyone around might be in a dilaudid haze and miss its warning signals. Still, our night last night was as peaceful as any we've ever had here. Scrunched into a little corner of Annika's bed, with the side rail up to keep me from flopping to the floor, I occasionally awoke to a numb arm or leg, protesting the lack of blood flow resulting from the awkward positions I took up to avoid laying on or pulling any of Annika's lines. When I tried, carefully, to shift my position and regain feeling in my extremities, Anni would stir and reach out her arms, stiff with armboards supporting her IV's. "Stay," her little creaky voice would command. And I would say, "Of course I will," and then find a new uncomfortable position for sleep. Finally I awoke with the feeling that it was morning, although the window behind us was still dark. No bright and clear dawn to signal the new day, but when I looked at Annika's eyes, already wide open, I saw a brightness and clearness there that more than made up for the dark. Looking up at the large wall clock, I saw that it was 6 o'clock, Annika's normal waking time. Then I felt a new discomfort. Not the stiffness of arms and legs, but a feeling of my pajamas hanging on me too heavily. I reached my hand down to the bed, and felt that I was laying in a huge pool of wetness. I looked at Anni and said, "This bed is really wet." After so many mornings when we both awoke wet from Annika's night-long sweats from fevers or withdrawal or both, I was surprised when she explained calmly enough, "Yes. And that is because my diaper is leaky." I stepped out of the bed and my sweat shirt and pants drooped wetly off of me. Annika observed, "You are going to need some different clothes, Mama. I think you need to call the nurse. I think I need to be changed and get dry. I think I am thirsty for some ice water. I think I need some breakfast." With that long speech, run together in her adorable voice (for proof of its undisputed adorableness, check the links to recordings of her singing on the sidebar), I welcomed back my oldest daughter, with her flights of fancy and take-charge attitude. How we have missed her.

Friday, January 13, 2006

see no evil

Annika has spent the past 48 hours refusing to open her eyes. When the child psychologist came by on her morning visit to Annika she asked her, "Annika, does the light hurt your eyes?" Annika, after a few seconds shook her head and squeezed her eyes tighter. In a little whisper she answered, "The monsters hurt my eyes." Still I think we are making progress on the hallucinations front, and now she is mainly scared because she remembers the things that she has seen. On the good news front, the glorious and unexpected and wonderful news front, Annika was closed yesterday! OK, not completely closed, but closed enough that when she runs her hands down her tummy she finds a smooth patch of skin only interrupted by a neat line of gauze-covered staples. The transplant surgeon called in the plastic surgery service because he suspected she would need a skin graft to close her. But the plastics team was able to find enough viable skin to make the closure. They were even able to close the upper layer of the fascia, although the muscle and second level of the fascia under that are still open. So she has a rather large hernia across her tummy, but we'll take that over gaping wounds any day, thank you very much. The closure was so neatly done that I inquired whether we might get in plastic surgery to close her after every surgery. I think Annika's neat-streak is going to be very satisfied.

Tuesday, January 10, 2006

where the wild things are

In our past PICU experience, the hardest time is when your child is in limbo as the sedation is weaned to allow them to wake up, but they are still on the breathing tube. Believe me, you really don't want to be awake when you're on the ventilator. The PICU attending last week specializes in pulmonology, so he knows a lot about kids on ventilators. He tried telling me that after a child's been on the vent for a couple of weeks that it's not really so uncomfortable anymore. "In fact," he enthused, "I've known kids who have been awake and happily playing cards while intubated." Uh-huh. Meet my daughter, sir. The girl who was still kicking after huge doses of morphine and versed on top of a chloral hydrate and benadryl cocktail. Oh, and also two doses of a paralytic drug. Kicking, I tell you. She's not one to live by the serenity prayer ("God grant me the serenity to accept the things I cannot change; courage to change the things I can; and wisdom to know the difference.") Or maybe it's that she's your typical child, with more courage than wisdom. Although, before I go knocking her wisdom, I should recall that she'd already proven that being intubated is a state that she's perfectly capable of changing herself. So maybe the serenity prayer has just missed out on a category: things you damn well can change, but really, really shouldn't. I know. Nowhere near as poetic. The first night after her extubation was hard, as I expected. I stayed up all night, but greeted the morning with the optimism that every day should be easier than the next from now on. I got a little sleep during the day, but mainly I played with Frankie and did laundry, all with the expectation that that night would be better than the previous one. I could not have been more wrong. Thursday night she began hallucinating. And not friendly things like butterflies and pink elephants, but the sort of things that show up in Marilyn Manson videos. Well, OK, maybe not that bad, but on the other hand the most terrifying dream I had as a child was of a seal chasing me down an ever-lengthening hallway, so I know it doesn't take much at that age. (Yes, a seal, noted for their creepy friendliness and frightening pursuit speed on land. And this was before The Penguin Movie cast seals as the bad guys.) It all started when she awoke trembling and wide-eyed. She began pushing herself off her bed with a frantic determination. We finally got her to tell us what was wrong: she saw fire in the corner of her room. We tried to convince her that there was no fire, and explain where she was, but she clearly wasn't reassured. Finally, exhausted, she drifted back off to sleep. She awoke again 10 minutes later, screaming, "Someone please help me! Help me! Someone!" Tears began streaming down her face as she tossed her head side to side and beat at the air with her arms. The expression on her face was one I'm hoping that I'll not remember long. I tried to hold her, to keep her from hurting herself, and I told her that I would help her, if she would tell me what was going on. "I'm in the dryer!" she whimpered, and she pulled her knees up to her chest and cried and would not be consoled. And the night went on like that, all night long. More fire, more tears, more screams, more terror. The next morning it began all over again. When Jörg walked through the door, she stiffened and began crying. "It's a bear," she declared, when quizzed. We turned on the lights, and had Jörg turn circles while we tried convincing Annika that her father was not, in fact, a bear. I'm not sure we ever fully persuaded her, but at last she conceded that he was, at least, a friendly bear. A med/psych consult was called in, and Annika is now on an anti-psychotic to control the hallucinations. Anni is on a lot of miraculous drugs that have made her joyous life possible, but I have to say that I have never been so grateful for a drug as I was for that teeny little pill that extinguished the fires surrounding her. Now we have to deal with the fears that are more based in reality. She has been endlessly picking at the dressing covering her still open abdomen. The surgeons had hoped that the incision would close on its own after 3 weeks or so, but she's headed for 4 weeks now and the wound is still gaping across her belly. When she puts her hands down there, she can feel that there is a sudden hole at the border of her familiar abdominal scar. Last night she put her hands on either side of the chasm. When I looked at her, concerned that she was trying to remove the dressing again, she only asked me, "Mama, can you put me back together again, please?" I wonder if she's seeing herself as some sort of Humpty-Dumpty right now, afraid that she has been broken irreparably. Plastic surgery came by today to have a look at her tummy and talk to us. Anni's transplant surgeon is beginning to think that she may need a skin graft (using some of the skin from the back of her thigh area) to cover her abdomen, because the fascia may simply be too damaged to reclose on its own.
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Again, I wrote this and then did not have a chance to take the laptop upstairs to connect to the internet and post. So more recent news: After a few days on the anti-psychotic drug, the hallucinations have returned, with an aural component this time. Mainly now she's seeing monsters. A typical conversation: "The monsters are coming! Hide! Please!" "Annika, there are no monsters here. You're in the hospital. We can check the room to show you there are no monsters here. Really. Truly. No monsters." "Yes, there are. Right there. There are five of them!" And just to add to the fun, she's also seeing some sort of goo covering things. Not too clear on what exactly that amounts to, but she's none too pleased by it. Today, Anni's nurse, Genny, and I built her a tent out of sheets, I.V. poles and hemostats. For the nighttime, we folded back the sides and just left it as a canopy so that the nurse can still see her while she's sleeping. It's a pretty cool setup, though, and she loves it. It's great when you can still be a five-year-old and hide out in a tent, even when you're in the PICU.

Friday, January 06, 2006

milestone

Annika's first word was "more." And her second. And also her third. So, yes, she is extubated! All that breathing is now being done on her very own. Well, of course, there's a lot of oxygen being blown into her nose, but, you know, there are people paying for the privilege of nasal cannulas at oxygen bars around the world, so I can't freak out about that too much. In an amazing show of lung resilience, Annika went from needing very high ventilator support on Saturday before the chest tube was placed to requiring only pressure support all through the night Tuesday. So Wednesday at noon they removed the breathing tube. The first several hours off the ventilator were were unbelievably wonderful. She was still sleepy from the sedation, but when she awoke, she was calm and responsive. Since she had been on the ventilator for so long, the doctors didn't want her to drink anything until the next day, just to be safe. But of course, her mouth was dry and throat sore from the tube (and you can't swallow your saliva with a breathing tube in). So I offered her a pink mouth sponge dipped in water to clean her mouth. Of course, she took it in her mouth and sucked on it eagerly, moving her tongue all around the ridges of the sponge's star shape. The sponges are attached to a little cardboard lollipop stick, and I pulled it back out after a few minutes. She looked at me with her bleary, drug-shrunken pupils and said, "More." I tell you, it was more of a moment than her actual, very first word. Annika was a late talker, not really taking steps toward verbalization until well after her second birthday. The speech therapist working with Annika suspected that part of her problem was lack of abdominal strength (try talking out loud and put your hand on your abdomen while you do it -- see how you have to tense those muscles to control the air flow that powers your voice?), so she taught her some hand signs to speed up the process of communication. The first sign that she really took to using was the sign for "more." So she's consistent, at least. But her first spoken word as a child? I couldn't actually tell you. You know how it is -- they start making these little vocal noises, and you, the eager parent, listen with ears ready to assign meaning. But it's always kind of hard to identify the moment that a word is actually used in all its word-like glory. So you end up saying that "daddy" was her first word, despite the fact that the sound she was making, "da," was used to refer to mommy, daddy, the cat, ducks, cars, birds, bathtub, and once perhaps even a hairball from the cat excitedly discovered on the floor one morning. (And, just to be clear, "excitedly" here refers to Annika, not me. My own opinion of hairballs is somewhat less touched by wonder.) Yesterday's "more," though, was unambiguous in its intent and execution. Coming out in a creaky whisper, she was perhaps shocked when I jumped up and said, "Oh, that's wonderful, Anni! I can hear you!" Unfortunately, she couldn't see the huge smile on my face under the mask we now have to wear around her. Oh, that's the other thing. We now have to wear masks and gowns at all times in Annika's room. The nurses wear gloves, too, but we go bare-handed so she can at least feel the skin of our hands stroking her head. Then we're just careful to wash our hands when leaving the room. She's tested positive for a bacteria called B. cepacia from her breathing tube. It sounds horrible to have bacteria down in your lungs, but of all the bacteria that could have turned up, this is one of the more friendly ones. At least friendly for her. For children with cystic fibrosis, this is an incredibly deadly bacteria, so she's in contact isolation to prevent spreading the infection to any of the CF kids. This bacteria could also cause problems for her if it turns up in her blood or in her urine, but so far it's only shown up in cultures from the (now gone and good riddance) breathing tube. Naturally her extubation has been a source of incredible joy and celebration for us. But it's never all good news in the PICU. It just doesn't seem to work that way. Two days ago Annika had a very bad day. Her sedation started wearing off a bit too much as they were in the process of waking her up, anticipating getting her breathing tube out. In her goal-oriented wakefulness, she took her tongue and pushed at the breathing tube until the tape was loosened and it was dangling a bit precariously out of her mouth. While waiting for the x-ray tech to show up and check if she had moved the tube out of proper placement, her nurse stood by her bed and held the tube in place. Meanwhile, Anni was waking up more and more and becoming more and more panicked. Then everything went a bit chaotic. She spiked a fever, threw up, put out a huge amount of old, dark blood into her diaper, and began crying in either pain or fear. After an emotional hour, she finally received enough sedation to put her back to sleep and we all recovered ourselves. Despite the extra sedation, she still proved herself strong enough over night to have the breathing tube removed the next day. But since she no longer was on the ventilator to make sure she kept breathing, the doctors decided to switch out her drugs to begin the weaning process in order to avoid being so sedated that her body forgets to keep breathing. Just a few hours after the switch, she woke up in a distressing state of terror and agitation. The first thing she tried to do was pull out her arterial line. With her teeth. After the failed attempt at gnawing her right hand free, she decided to go for her Foley catheter instead. She had removed the tape tethering it to her thigh before I caught her hand in mine. By the time we had gotten the catheter retaped to her other leg, she had shifted her energies to removing her NG tube. Insufficiently taped, she finally hit upon success. A short-lived success, as it of course needed to be replaced in the morning, but I'm sure it was a rush nonetheless. Giving her the affectionate nickname, "Houdini of the PICU," we put immobilizers on both hands (not on the elbows, since I still wanted her to be able to move the arms after being motionless for so long), which we soon learned to cover with terry cloth slippers after she wiggled her hands out with apparently very little effort. As the night progressed, though, her situation only got worse. She was unable to relax for more than a few minutes before her body began trembling and she would awake with a jolt, seeming frightened and confused. We thought maybe she was in withdrawal, so we gave her more of the drugs that are supposed to help with withdrawal symptoms, but they only seemed to make things worse. She fought all night, and I stayed beside her all night long, holding her arms and not sleeping for fear she would hurt herself. Her nurse spent the night paging doctors, trying to figure out what we could do to help her. Throughout all this, she began spiking fevers again on a regular basis. And then her chest tube, scheduled to be pulled the next day, suddenly began dumping out all sorts of fluid again, 150 cc's in a 5-minute span. So Thursday morning the doctors decided to biopsy her liver, to rule out rejection or any other liver problems as the source of the fevers. They also decided to do a CT scan to check again for signs of infection in her abdomen, although the surgeon has told us that if she does have any more pockets of infection there they are pretty much powerless to do anything about them. So we'll hope nothing shows up there. Although the prevailing wisdom is that her strange behavior throughout the night was due to drug withdrawal, they called in neurology to evaluate her, just in case. So she's also going to get an MRI of her brain, to make sure that the fevers aren't a sign of a bacterial or fungal infection attacking her brain, which might also account for her behavior. For the biopsy and dressing change of her still open abdomen, they tried out a drug from a different class of sedation drugs, and it has worked wonderfully to calm her. So at least we are able to catch our breath, watching her rest, and process the constant flow of information. Because of Anni's new status as cepacia-positive, we had to move to the "cepacia area" of the PICU. Children's is very aggressive, commendably so, in trying to limit the spread of infection between patients, always a battle in hospitals where so many bugs come to live. But this means that we have lost our PICU neighbors, Brad and Angela and their son. We miss their company, and worry about Matthew. Annika and Matthew both were identified as infectious (but with different bugs) on the same day, following in their pattern of lock-stepping together. And while Annika's successful extubation is a huge step forward, Matthew had to be reintubated after a terrifying midnight near-miss episode that left Brad and Angela still shaking the next day when we finally met up. I want so much to somehow be able to hitch Matthew's wagon to Annika's, to have him join her on the path that is generally more improvement than decline. I know that the course of a long-term PICU stay is almost always a series of ups and downs, and his upturn could be just around the corner, but he's been hit with so much more than his share. Here is Matthew's website again, if you'd like to join me in my daily practice of sending him as much healing energy and encouragement as possible.
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This was written yesterday, but again I had no chance to connect to the internet to post it until this morning. Last night was again a restless night, but it is looking more and more like her difficulties are due to a bad case of withdrawal. Unfortunately, her body is in such a state that the drugs they usually give to help with the withdrawal symptoms (methadone and atavan) are actually making her feel worse, called a paradoxical reaction. So it's going to be a tough week as her body adjusts. The new drug she's on has allowed her more moments of lucidity, though. Mainly her mood is very sad right now, when she wakes up and realizes where she is and feels all the tubes attached to her. Last night she woke up and looked around until she spotted me. "Mama, I am not well," she said, in a statement sounding one part objective assessment, one part accusation, and one part plea for comfort. I climbed into bed with her, which is so much easier now that she is off the vent, and stroked her hair until she went back to sleep. We have a picture of her up on the door of her room, which everyone can see as they enter. It's this one: hospital dress-up Underneath the photo I added in the message, "Thank you for taking care of Annika." Everyone is anxiously awaiting the return of that little girl with the sweet smile, as well as her counterpart, little mischief maker: DSC03502.JPG

Placeholder post

Just a short note: I have heard from some of you recently. I share your concerns about not hearing news lately. I am posting this as a placeholder so you can let Moreena know your thoughts. --posted by Running2Ks

Sunday, January 01, 2006

new year, new tubes

Anni is now the proud, new owner of a chest tube. The CT on Friday evening showed that she had so much fluid in her chest cavity that her right lung was nearly completely compressed. So rather than just tap the fluid, they left a tube in to keep draining it off. In the first few hours of the chest tube being placed, they pulled off 1 liter of fluid out of the chest cavity. Yup, that's 1,000 cc's of fluid. And it's still coming. Is it perhaps the 500th time we've heard the doctors say, "Wow. We never would have expected that! She really looked good for [insert surprising medical finding here]!" ? The good news is that the fluid from her chest doesn't show any sign of being infected. The bad news is that they are saying that she will be on the ventilator for at least another week, and that, evidently, is the optimistic view in which all goes well and Anni doesn't pull any more bunnies out of her magic hat of medical mysteries. I don't mean to sound too overly dramatic. Despite the shocking lack of right lung on the chest C.T., Anni's G.I. says that the C.T. of her abdomen looks millions of times better this week. And she tells us that she is surprised at how well her liver appears to be doing, despite the bowel perforation and massive infection. I'm just sick of having her on the ventilator. It's exhausting seeing your child looking so vulnerable for so long. And, even worse, the massive quantities of drugs she is on (and I have seen enough doctors' jaws drop when the nurses report how much sedation she has required to keep her still for procedures to know that "massive" is a completely accurate description) are beginning to be insufficient to keep her comfortable. Although I don't think she's in any pain, when she wakes up, her eyes dart around the room in a panic. This morning it took her 4 hours to settle back into sleep. No wonder. She's on a ventilator; she's got a huge N.G. tube down her nose (and this is not your usual N.G. feeding tube, this is the kind large enough to pull off blood and lavage her stomach in case of another esophageal bleed); she's got essentially a vacuum cleaner attached to a sponge stuck inside of a huge opening in her abdomen; she's got a chest tube suctioning off liquid beside her right lung; she's got multiple I.V.s incapacitating both arms; she's got a foley catheter to catch her urine; and, the final indignity, she has to wear the most horrible, plasticky, uncomfortable big kid diaper. Still, I think all of this would be bearable if only she had the breathing tube out so that she could at least complain about it all. There's something annoyingly wonderful about being able to air your grievances, even if it changes absolutely nothing about the situation. Witness my entries of the past several months.