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 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.