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.

Monday, March 20, 2006

acclimating

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. early easter bunny 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. chocolate shake 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. gratuitous Frankie shot

18 Comments:

Anonymous Anonymous said...

Sorry that she keeps having bleeds, yet glad the doctors feel this is normal...okay...whatever the 'correct' term would be. Even 'gladder' that she's up to easter egg hunting! And wow...even the cat gets excited about chocolate...who wouldn't?

3/20/2006 11:26 PM  
Blogger Rowan said...

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,...

About as normal as life can be, I suppose. I'm glad to hear about the egg hunts. It's even good to hear about the marginalizing of your thoughts on bleeds. You've been operating in crisis mode for so long now. You all deserve a break...no matter how odd it may seem to you.

I'm very glad you brought up that book. If I can bring myself to do so, I'll have to check it out. It may be a crushing read, but it is always helpful to see all the ways to view topics...especially when they hit this close to home.

3/21/2006 12:06 AM  
Blogger Jenevieve said...

Yay for kitties and Easter egg hunting!

Oh, and thanks for the beginning of your thoughts on that book. I skimmed it the other day at an estate sale, and I thought it looked interesting. Maybe I'll have to pick it up after all.

3/21/2006 1:19 AM  
Anonymous Becca - momofnataliebear said...

How is it that Annika can make Easter an even cuter celebration and good for you for celebrating a bit early!!!!

I am going to email about the bleeds and hemoglobin levels. I think the lowest that the bear's hemoglobin got was 4.2.

3/21/2006 8:46 AM  
Blogger Phantom Scribbler said...

Eh, I haven't read that one, but I've read some of Nancy Scheper-Hughes' work on the organ trade internationally. Pretty awful stuff.

Your hemoglobin metaphor is a knockout, by the way.

3/21/2006 9:14 AM  
Blogger Yankee T said...

You are amazing. All of you. Kind thoughts coming your way!

3/21/2006 11:57 AM  
Blogger Yankee T said...

You are amazing. All of you. Kind thoughts coming your way!

3/21/2006 11:57 AM  
Anonymous Jenn said...

Moreena,

We need to talk about Friday. I'll try to call this evening after the girls are in bed and after I've made a quick run to the hospital to squeeze my nephew who was born last night. William Christopher made his entrance at 9:56 p.m. weighing in at 9 lbs. 8 oz., 22" long. He's a cutie! Talk with you soon!

(P.S. Would Annika be up for a birthday phone call to Shelby tonight?)

3/21/2006 1:08 PM  
Blogger Sarah said...

I just wanted to answer one question this "informative" book raises. Should you subject a child to the pain of organ transplant in hopes prolonging their life? My mother in law received a liver donation just about 4 years ago now. She was deathly, awfully sick and she was close to 60. Should we allow someone that is on the tail end of their life to accept the gift of liver donation? Ask my seven year old son who has had four more years of love from his grandmother. Ask Annika who has had early easter egg hunts. Even one more moment of joy makes the journey or organ donation worthwhile. I am signed up to be an organ donor, and I would be appalled if someone tried to pay my family for it. It would be a gift, with hope for the future as my only payment.
That is my two cents, you can spend it or toss it out the window.

3/21/2006 3:03 PM  
Anonymous peripateticpolarbear said...

okay, now I want an Easter egg hunt...of course that could be because I gave up candy for lent.

The girls are precious and I'm glad that you're entering into the lower stress version of response well.

3/21/2006 3:44 PM  
Blogger profanglophilia said...

As a firm believer in organ donation, I would never accept monetary compensation for doing so. No amount of money would bring back the loved one whose organs are being donated... so why even try? Personally, I'd rather receive photos of Annika (as an example of a recipient) enjoying life because of my loved one's liver (or any other organ) than to get a wad of cash and drive a new car or whatever one would spend said cash on. There's no greater gift than life... no matter who gives it and who receives it.

And so glad to see Easter came early. When you run out of Halloween candy, we've got some Valentine's candy still sitting here I'd be happy to send your way!

3/21/2006 4:00 PM  
Blogger liz said...

Big hugs!

3/21/2006 4:57 PM  
Blogger angela marie said...

My organs are going to someone for free. I think that money given for something like that is a poor choice. These are 'items' no longer needed by the person donating; it does seem foolish to me to put them in the ground. I would also be interested in hearing about a cultural difference, such as in Japan.

3/21/2006 5:53 PM  
Blogger Chana said...

Hi. I'm sorry that your little girl is ill. I will include her and the family in my prayers. My youngest daughter was diagnosed with Scleroderma a few yrs back. There is nothing more painful than seeing your child hurt. In the other hand, there is so much to learn from them. There is no greater bravery and determination. I will be back to read how things are going. God Bless.

3/21/2006 11:39 PM  
Blogger purple_kangaroo said...

I'm obviously a supporter of organ donation, since my mother is alive because of it and I have a pretty good chance of being on the receiving end someday (hereditary kidney disease). My mother has had an exceptionally good experience with receiving a transplant, with no rejection episodes and amazingly good health after the transplant, whereas before transplant she was very sick and slowly dying even with dialysis.

About the financial thing; I have mixed feelings. I certainly don't think the recipients of organ donation should have to pay the family of the donor, or anything like that. But in the cases where a significant amount of money is being made for cosmetic or elective procedures, or for standard things like dental work . . . well, I guess I feel that if a significant profit is being made from the body than the family of the donor should receive part of the benefit.

There's a book online called "The Nasty Side of Organ Transplanting" by Norm Barber that, from my reading, has some major errors and inaccuracies (such as painting kidney transplants as a surgery of convenience instead of necessity, among other things), but it did make me think about some things.

It claims that a human body can generate products worth 2 million dollars, and that the law of supply and demand means that many parts needed for truly necessary procedures are diverted to unnecessary procedures because skin, for instance, can be sold for a much higher price to a plastic surgeon than to a burn unit.

I guess I think that either nobody should make money from organ harvesting, or the family should get part of that money.

3/22/2006 1:20 AM  
Anonymous kathy a said...

(((((((( moreena ))))))))
(((((((( annika ))))))))
(((((((((frankie )))))))
(((((((( jorg ))))))))))

the easter egg hunt is just excellent!

treating the bleeds differently must be both liberating and scary.

the idea of treating donor organs as a commodity is just creepy to me, and unethical. it honors the lost one's life to provide hope and help to another family. [but to me, this is a no-strings-attached gift to the universe.]

3/22/2006 1:28 PM  
Anonymous Anonymous said...

The Third Edition of The Nasty Side of Organ Transplanting is available at www.geocities.com/organdonate

It may be more accurate than the Second Edition though one critic has already said it should be more balanced: the good side of organ transplanting should be acknowledged.

5/25/2007 1:00 AM  
Anonymous moreena said...

I don't know what to make of that geocities publication. Geocities publication?

I haven't read through it yet, but just looking at the front bits, it all looks a bit sensationalistic, paranoid, and rant-ridden. Absolutely I am suspicious of a book that doesn't appear to examine both sides of the equation. The thing about "Twice Dead" is that she is very careful in her consideration, and always acknowledges where her prejudice and fears may come into play. She doesn't always come down on the side of organ transplantation (in fact, I think she is very suspicious of the whole enterprise), but she's always careful to examine the issues carefully and relatively evenhandedly. I don't see any evidence of that caution in the e-publication you cite. Perhaps I'll steel myself to read a bit more, so I can make a more fair evaluation.

5/25/2007 6:59 AM  

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