We are still in the PICU, but anticipate leaving soon. We will not be leaving because everything is fixed and OK and back to life as usual.
I suppose I should have updated sooner, but I've needed a few days to come to terms with the situation. I don't want this to turn into my journal of grief, and the past few days have seen me falling apart, at least a little. I want to live up to the title I chose for this journal, to live up to the lesson of Annika's observation that falling down can be done with style and appreciation for the change in point of view that falling offers.
It's not easy to do, as I've lost that enviable "It's all good, man!" attitude that comes so naturally to children.
As you may have gleaned already, the news here is not good. Although it could be worse, I suppose. As of yesterday, there was still some hope that perhaps Annika's renewed bleeding was due to a stomach ulcer or other remediable issue. But yesterday Annika had an upper and lower scope, which revealed no possible bleeding source in her esophagus, stomach, or colon. This means that, by elimination, the bleeding must be coming from the vast area in-between the two, her small intestine. Past CT scans have revealed possible varices around Annika's Roux loop, which is where her bowel was attached to her liver during her Kasai, the surgery done at 6 weeks in the hope that bile flow would be reestablished. This is thought to be the most likely source of her bleeding.
The bad news is that there is nothing the doctors can do to fix this bleeding, short of a retransplant, and the surgeon assures us that a surgery as complicated as a retransplant (complicated by Annika's difficult anatomy and the fact that she is still recovering from the shunt and subsequent bowel perforation and sepsis) is unlikely to have a good outcome right now. Giving it straight, she's unlikely to survive a third transplant at this point.
So we're back to 1950's-style medicine, back before there were shunts and pediatric liver transplants. She'll take a blood-pressure medicine which helps prevent bleeds in adults, but hasn't been shown effective in children. Still, it might
help and we don't have much choice but to try it. We'll hope that Annika's bleeds remain manageable, at least for 6 months or a year, when Annika will (hopefully) be a better candidate for successful transplant.
We have no idea what to expect from life in the next few months. Annika will go home with a PICC line, in anticipation of the likelihood that she'll be needing transfusions and other IV meds on a regular basis for future bleeds. We'll probably become regulars at our local ER, and we might as well set up a regular Annika ambulance service, since she'll always need to be transferred to Chicago.
We don't know if she'll be able to return to preschool. We don't know if we'll be able to sign her up for kindergarten, as all the other parents of 5-year-olds are thinking of around this time. We don't even know how much time we'll be spending at home. We don't know how bad this is going to get, with our hands tied behind our backs.
There's so much we don't know.
But it could be worse. That much, at least, we do know. Not that that's anything but cold comfort.
For now we're hoping that Annika catches some breaks; that she can rest enough in relative health to recover from the storms of the past few months. In another few months, if we're lucky, she might have recovered enough to stand a good chance of surviving a retransplant. In a few months, if we're really really
lucky, the bleeding might have stopped on its own. But she's been bleeding on such a regular basis, it's hard to hold out much hope that this will happen. It's like the optimism lobe of our brains has been surgically excised.
All this time, through everything that we've been through with Annika, I've never really been able to imagine that we would lose her. As I've always said about myself, I have a deep well of denial and I keep myself well hydrated. But for the past few days, it's all I can think about. And I'm full of questions that I've never wanted to ask myself.
Questions like: How much should we be willing to put her through in what may be a futile effort to prolong her life? If she only has 6 months or a year left, shouldn't we try to make those the best 6 months that we can? But what if we just buckled down for those 6 months and dealt with the unpleasantness? Might we then be able to save her life? If we couldn't save her life, but perhaps give her just an extra 2 months at the cost of 2 really horrible weeks, would it be worth it?
The problem with having a sick child, besides the obvious stuff like walking around feeling like something is trying to claw the heart out of your chest, is that you're forced to make decisions for another human being, who is totally dependent on you. I have my own ideas about what would be enough for me, but how can I know what Anni would be willing to go through? I tell Annika that she can't eat right now, as she hasn't been able to for the past 5 days, because it might make her bleed again, which would make her very sick like she was before. She tearfully replies, "OK. Fine. I'll be very sick again then. Just let me eat." And, of course, I can't take that seriously because she is just not old enough to understand the ramifications of what she's saying. But it's not right to totally ignore the sorrow behind what she's saying, either.
When Annika was first moved down to the PICU, the doctors had to place a central line in her bedside, never an ideal situation. One of the doctors tried valiantly to explain to the crying Annika why all this was necessary, "Annika, we need to put in this special IV to help us fix your tummy!" At this, Anni scrunched up her nose and began crying harder. I shook my head, explaining to the doctor quietly that she was a bit sick of hearing this "fix your tummy" business as an explanation, since it had been cropping up since mid-November and, thus far at least, never seemed to work.
It seems that lately all I can do to comfort Annika is to assure her that she only has to put up with crap for a limited amount of time. I'm constantly explaining the terms of the negotiation: She can't eat until she's off the octreotide (and, yes, she does by now know its official name, not just that it's the "stop-bleeding-medicine") and has gone 6 hours with no bleeding ("How long is that? Maybe 5 minutes?" she wails); she can't remove the NG-tube until her poop turns clear (For the clean-out in preparation for the scope, at her first toilet session she only peed and when we told her we needed to see poop she replied, "Well, it's my pretend poop
!" She twisted her head to look behind her and continued, "And it's clear!"); she can't go back upstairs to a regular room until the doctors are sure she's safe ("Yes! I am! I am just fine
At first Annika was really angry about bleeding again and moving back to the dreaded PICU. She threw her tooth fairy money across the room (after asking permission first!). Later on, I gave her a pillow to bang on, after she threw a half-hearted punch at me in frustration. I sat on the bed with her curled into the sheltering space between my breast and armpit while she cried with exhaustion, having beat the stuffing out of the pillow. "What can I do to make you feel better, sweetpea?" I asked, expecting to hear a request for a story or a movie or a song. Instead she said, "How about we go live in another country for a while?"
She's a problem solver, alright. And I love that she never thinks small.
But 5 days later, she seems to have accepted her plight, much as I have. She frequently spends her days with the TV on, music playing in the background, while doing a puzzle and perusing family photos on the computer. She only turns up the volume on the TV when something catches her interest. As usual, the commercials are as likely to be as interesting to her as the actual programs. One commercial for baby formula caught her eye yesterday.
"Mama, we need to get that!" she proclaimed earnestly.
"Why do we need to get that? We don't have a baby around anymore! Little Frankie eats grown-up food, you know."
And I resisted mentioning the fact that neither of my girls had much truck with bottle-feeding, anyway. Saving the stories of the late-night feeds for the teen years, I suppose.
"Well, you know, I'll need it for the baby that's going to pop!
out of my tummy someday," she explained seriously, only allowing a bit of morbid glee in the explosive sound of "pop."
"But that's still a long time away, sweetie," I explained. Jörg, ever the practical one, added, "And that baby food is unlikely to still be good by that time."
"OK," she agreed, "And I guess I need to grow some breasts or something first, right?"
We laughed at that, much to her disgust. I felt better, seeing a return of my happy child. And the answer to my questions, the answer which I knew all along anyway, was right there before me. Annika's gift, and I know it's one shared by all kids, is to find joy when others might have stopped looking. So of course we'll go through it all, together, for the chance for more of that joy. Whenever it comes, for however long.