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

Wednesday, 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 www.givelife.org, 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.

31 Comments:

Blogger Jane Dark said...

No one could ignore monsters like that. But naming the staples is too funny! Thank you for sharing that with us.

12/14/2005 4:32 PM  
Blogger Running2Ks said...

That Anni never stops surprising me with her creativity and resilience. She is amazing. Naming the staples, obliging her sister, looking for answers, craving and demanding "safe". She is a treasure.

My blood appointment on Friday is 3:15.

12/14/2005 4:45 PM  
Anonymous Anonymous said...

thanks for the update...i had wondered about Frankie's trip to the ER...funny. It must be hard not knowing what is next for Annika. Still here and praying...

12/14/2005 4:57 PM  
Anonymous Anonymous said...

Liebe Moreena,
Du machst das ganz phantastisch. Deine Stärke ist bewundernswert. Grüß die liebe Annika. Grüß Jörg und Frankie. Wir drücken weiter die Daumen und verfolgen Deine Berichte. Alles Gute!
judit, miklós und martin

12/14/2005 5:00 PM  
Anonymous Marisa said...

BIG HUGS to my little Minnow!!

I never fall asleep with the sedation either. Annika is just like me it sounds like.
I hope things start turning around.

12/14/2005 5:07 PM  
Blogger candace said...

I am glad that Anni got a good night's rest. I have to tell you, after Mark's surgery in May (to fix his hernia they reopend his entire transplant scar) he brought home all the staples and the tool used to remove them, so he could show the kids! He rode home from Northwestern on the train. I can't imagine what people thought of him sitting there with his baggy of staples! Anywho... our thoughts and prayers are with you, still. I sent a package, also by the way. Hope you got it. Love and hugs.

Candace

12/14/2005 5:14 PM  
Blogger Phantom Scribbler said...

I'm glad Annika's liver is healthy, but how frustrating to not know what you're dealing with, or how it will improve. We're hoping and praying that her wish -- to be back to normal, and home -- will come true soon.

I wonder if you can get a dollhouse for metal staples...

12/14/2005 5:17 PM  
Blogger Laurie said...

The only thing I feel qualified to comment on here:

Anthony's staples from his transplant surgery are nicely housed in an (unused) urine specimen cup.

Moreena, my thoughts come around to all of you so often.

12/14/2005 5:18 PM  
Blogger mc said...

Wouldn't staples like to live in a little box with a magnet that kept them all together??

I'm continually astonished at Annika's creativity and good humor. And how sweet of her to tell you when she'd absorbed the message about being safe... Hugs to you all.

12/14/2005 5:29 PM  
Anonymous Anonymous said...

Look at this rush of comments--all of us loitering around, waiting for the news. It must be hard enough without having complete strangers fretting over you! But there's nothing to be done about it.

I loved your post, the way you still find humor and meaning in the darkest times. What a gift you have, Moreena, and what a gift you are to your lucky, beautiful family.

xo Catherine

12/14/2005 5:31 PM  
Anonymous Anonymous said...

Moreena

Jen saved her staples from her 1st transplant. They reside in a transparent thingy in her transplant scrapbook. Our prayers are with you and Annika.

Karen - mom of Jen and Jon

12/14/2005 7:14 PM  
Blogger Jen said...

LOL at the scrub brush!

Kids are so amazing, and it seems like you have an extra exceptional one! Keeping you all in my thoughts.

12/14/2005 7:17 PM  
Blogger J. Andrew Lockhart said...

I hope things keep going the right direction!
jal

12/14/2005 8:54 PM  
Anonymous peripateticpolarbear said...

Wishing I would be in Chicago in time! I'm glad that the liv er is healthy but sad that there are still mysteries!

12/14/2005 9:11 PM  
Blogger halloweenlover said...

I'm glad to hear that a transplant is not on the horizon, but I agree that this is a scary place to be.

I've also been checking regularly for updates! We're Annika's fan club!

I laughed out loud about the Barbie scrub brush. Annika is too much.

12/14/2005 9:30 PM  
Blogger Scrivener said...

That image of you chanting to her that she's safe, and her telling you it was ok? Ooof.

Thanks again for keeping us updated. Our thoughts and prayers are with you.

12/14/2005 9:50 PM  
Anonymous Tammy, mom to Janna said...

Oh Moreena, I check your site every night to see what is going on with Annika...and praying for no bleeding. I pray they figure out what is going on and fix it and get you out of there!

12/14/2005 10:24 PM  
Blogger Annika said...

I have wished so many times in the last couple of months that I could give blood. I have never done so, for a variety of reasons, and now I can't. As happy as I am to be having a baby of my own, I wish I could help other people's babies too. I am happy to think that so many people have helped Annika to get her much-needed transfusions.

12/14/2005 10:33 PM  
Blogger Amanda M said...

You never know with kids and words they don't know...I for years thought argyle socks were gargoyle socks ;) Yes, the monsters lurk everywhere...

Big Big Hugs to Annika. So I'm not sure I understand the cause of her bleeding? It's not her liver?! Her liver is fine? That's awesome. Is it possibly her portal vein? I thought bleeds were caused by too much pressure on a vein, and that that pressure was caused by a hardened liver? But if the liver is healthy, then, where, oh where do the bleeds come from? There has to be a pressure creating mechanism somewhere...
My apologies if I'm confused, just trying to come to terms with this all.

12/14/2005 10:43 PM  
Anonymous Rowan said...

It sounds like, although what you're living through can hardly be considered normalcy, that you are all feeling a lot calmer. That in and of itself must be a relief. It also sounds like there's a lot of good healthy preocessing going on.

I love the part of the "safe" story where she told you that you could stop, now. She really knows what she needs, eh? Good thing she has no real dificulty expressing it. I don't know what inner source these kids have, but all the chronic kiddoes I know are angelic rocks. Annika seems to be a born leader in this area.

She slept well that night. I hope you are also getting your share. We continue to think about you around here, and send you love, peace and strength. Thank you for the update.

12/14/2005 11:14 PM  
Blogger Kathryn said...

How can you make us laugh and cry in the space of one post, Moreena? You and your very special daughter are quite remarkable...blessings on you all. My church community here in England (I'm a curate, a kind of trainee minister) are all praying madly for Annika. We'd gladly give blood for her (this family are all donors anyway) and hope that maybe you'll have a moment to engage with some friendly faces on Friday when the drive is on.
Take care. Hang on in there, Anni. You are such a star

12/15/2005 3:40 AM  
Anonymous Kim said...

Moreena - you have such a gift with words. I feel so badly for Annika and keep praying that she is better soon and that they find the answers you need. It is so heartbreaking watching your child go through this and trying to help them understand what is happening. I am keeping Anni in my prayers and hope she has continued strength. She certainly has a lot of spunk - and that will see her through anything!

Kim, mom to Sami and Kyle

12/15/2005 6:27 AM  
Anonymous Beanie Baby said...

How hard not to know what is coming next. I hope a game plan is put together soon.

Annika is a very resilient, strong little girl. She's my hero!

12/15/2005 6:34 AM  
Anonymous Anonymous said...

Beanie Baby is right! Anni is a HERO. I know very few adults who have remained as upbeat as her through all her medical *stuff*. Her sweet little outlook just amazes me.

I HAD to laugh over the cat's medicine - and the staples. Then cried thinking of her blaming herself and not feeling safe. Bless her little heart! God bless you all Moreena. I hope today's procedure goes well.

tina

12/15/2005 7:55 AM  
Anonymous Candace said...

Good about not needing another transplant, but I can see that it would be hard to be in limbo with no idea what comes next. Not fair is definitely an understatement. Your whole family is amazing.

12/15/2005 8:38 AM  
Anonymous Stephanie said...

Oh Moreena, my heart breaks for the pain that you and Gorg have had to go thru. :( It is so unfair that Annika has to endure all of this. I am glad that Frankie was able to spend some time with Annika. I know that when Analiese was transplanted we would sneak Chelsey into the PICU, and Analiese would smile so big at her big sister. I just want you to know that I think of you all everyday. I hope and pray that the doctors find a resolution for all of these bleeds.

12/15/2005 9:36 AM  
Blogger Shelli said...

I live in Minnesota but were it not snow storming out and I didn't have 6 kids to care for, I would drive there and donate blood for Anni. I am just crying inside for all that she has to go through. God bless you and your family at this difficult holiday time and I hope they find an answer for her soon!

12/15/2005 10:12 AM  
Anonymous Joanna said...

Moreena - you are incredible how you cocoon Annike and provide her with some rational in a situation that is just "not fair". How you also still manage to write so well is beyond me. I can do a week in hosp with all it's stresses and sleep deprivation until I start to speak incoherently and can't remember stuff that the docs told me one moment before.

So, as Amanda said, what on earth is going on here with your Annika? If I was in your position, I would start discreetly asking whether your docs could tap into the larger network of other centers to see if anyone else has had ongoing bleeding like Annike and whether any other teams have new ideas of what to do. This is clearly such an unusual situation that your docs might now contact their colleagues who are liver tx specialists at other centers of excellence for some input. Just a thought.
Take care.

12/15/2005 11:29 AM  
Blogger liz said...

Praying, praying, praying for all the monsters in Anni's body to just give in to the antibiotics and go away.

And laughing about the scrub-brush and the staples.

12/15/2005 1:46 PM  
Blogger Sarah said...

Moreena, I wish I knew what to say. It has to be scary that the doctors don't know what to do for Annika. Prayers for Annika to stop bleeding.

12/15/2005 2:32 PM  
Anonymous Anonymous said...

That Anni sure is a creative little girl! I hope her condition improves and that you enjoy the holiday season. I always wanted to name a cat Hepburn, by the way. It's funny, all these similarities that keep popping up! Best wishes to you, Jorg, and the girls...
-Anni in Indiana

12/15/2005 2:34 PM  

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