We've begun life under our new regimen. Annika had a bloody stool today. She asked, "OK! So are we going to the ER?" "Nope," I answered, "we'll just take you in to the hospital to get your labs drawn and watch you at home to make sure it doesn't get worse." She pulled one of her "hmmmm, I'm not sure if I agree with you on this one" faces, but only said, "I think I'd rather
go to the ER." I guess that's what you get with all those darn nice nurses. Annika apparently considers bleeds "occasions," like a birthday party.
To soften the blow of missing out on the placement of two large-bore I.V.s (exactly how short is her memory, after all?), I agreed to Annika's idea of having an early Easter. Annika likes to be in charge, though, so she insisted on being the Easter Bunny. We still have leftover Halloween candy, so she chose to fill each delicately shaded pastel egg with fake eyeball chocolate. Then she hid the eggs around the house in painfully obvious spots. I tried to ramp up the excitement a bit by pretending that I couldn't see the lemon-custard colored egg sitting in plain sight on the coffee table, with not even a few magazines to provide camouflage (Frankie enjoys taking my half-read magazines and stuffing them under the sofa - she's none too subtle in her demands that nothing divert my attention from my motherly duties). But Annika's never been one to enjoy drawing out the moment. She took my hand and led me into the living room, motioning toward the coffee table with a flourish worthy of a spokesmodel indicating the fabulous prizes on The Price is Right.
After I found all the eggs, and then hid them all over again for Annika to find ("But make sure they're not so
hidden, 'kay?"), the girls broke into their Eastereen bounty. Each one of the eyeball candies is chocolate with a different filling inside. Annika held one up to me and asked, "What's inside this one?" The type of filling is handily stamped on the outside (which kind of ruins the authenticity, as far as I'm concerned), but I was busy shooting photos, so I said, "Why don't you guess?" Annika's response was to shake the chocolate up and down, as if she were rattling a Christmas present. "Peanut Butter," she pronounced confidently. I have no idea what kind of sound, exactly, peanut butter makes inside a chocolate eyeball, but I'm thinking she and Forrest Gump need to have a little talk.
Then Hepburn found one of the eggs. Well, "found" it sitting right in the middle of the floor, and began doing that crazy paw-batting and pounce thing that cats do, even 16-year-old cats with bad thyroids. "Oh, no!" shrieked the girls, and there was much chasing and screaming and faux-concern over the egg's well-being.
I'm pretty sure that we'll be having Easter every day for the next couple of weeks.
Annika actually looked better today than she has for a while, and her rosy lips told me that her hemoglobin would come back fine. Which it did. Well, much more anemic than she was before all this
started, but fine for her at this point given the situation (how many qualifiers could I add on here?). Up at Children's, the general rule of thumb was to transfuse when her hemoglobin dropped below 8. During those long months when her body was so sick that, apparently, making new red blood cells to replace the ones lost to bleeding was at the bottom of the "to-do" list, after such things as "reinflate right lung" and "close giant hole in abdomen" and "clear massive pus-ball resulting from leaked bowel contents," she rarely deviated from that 8 borderline, bumping up only temporarily after transfusions. I remember asking the PICU doctors once about any long-term effects of prolonged anemia, and at what point a hemoglobin was so low that it was considered dangerous. In the cheerful manner of one who has seen way too many medically freaky things at an age much too young, the fellow explained, enthusiastically, that it's not really the level of the hemoglobin that matters so much as how rapid the drop has been. "I've seen kids come in with crazy hemoglobin levels, like 2
... and they're just fine! Because the drop for them has been gradual and their bodies have adjusted along the way. It's amazing, really."
I wonder if the same thing is happening to us, as a family. We were all so calm about the bleeding today. OK, it was easier to be calm because it was clearly not a massive loss of blood and she was acting mainly normal, except for a stubborn refusal to eat. But, still. Every other time we've seen such vivid evidence that things are still not all right inside her, we've reacted with, "Not again ... this can't be happening ... oh why oh why ... yadda yadda yadda." And I know that we got the straight-talk warning from Dr. Whitington that this would be happening frequently to her, but I'm still amazed at how quickly our brains and our hearts seem to be adjusting to this new life-style.
I wonder how low our hemoglobin will go before we notice the drop.
Because I am a total emotional masochist, I am currently reading Twice Dead: Organ Transplants and the Reinvention of Death
by anthropologist Margaret Lock. It's not an easy read - in the first few pages she writes quite unflinchingly about the process of organ procurement and a transplant surgery, and then questions whether or not she would be able to put a child through so much suffering in the interest of prolonging his or her life. I've not gotten far enough to enter into a thoughtful discussion, not least of which because I have to re-ignite the part of my brain that can plow through sentences loaded with words like "reify" and "valorize." But I have to say that, so far, some of her criticisms seem to be missing the point entirely. For instance, she wonders why donors must remain anonymous and why there is no financial compensation to donor families for allowing their loved ones organs to be "commodified" in this manner (and I have to admit that one of the things that has grated on me most so far is the frequency with which she places words in quotes to indicate her raised eyebrows, but here I find myself doing the same thing with her). Clearly she's not talking about putting organs onto the open market, but instead about making the gift-giving more reciprocal. Although I can't say that this is a bad idea, especially not if you're talking about bestowing some sort of honors at burial for organ donors, I do wonder if a bad implementation of this idea might come off as insulting to donor families. If you're giving money to donor families in recognition of their act, you have to be very careful not to make it appear that you are putting a dollar figure on the worth of someone's donated organs. Or merely making a token show of gratitude that is woefully inadequate to the magnitude of saving someone else's life. The area of organ donation and transplantation is already fraught with ethical concerns, and recognition of this fact is one reason that I'm reading this book, but I cannot see how bringing money into the equation would do anything but raise even greater concerns. As it stands, organ donation is taken to be one of the true acts of altruism, and that is, I suppose, what makes it so moving.
I'm looking forward to reading more of the book, though, especially since I've always been curious about the Japanese stand on organ donation and why it is so controversial in their country. I don't mind having my assumptions challenged every once in a while.
And here's a lovely gratuitous photo of Frankie, in service to no part of this blog entry. Just so you don't think I only take photos of Annika.