(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.