so

I guess it's official. Annika's liver is at its end.

"Seven wonderful and lovely years," I wrote to Cliff and his wife in an email, in explanation and gratitude and, in no small part, apology. As if this failure were our own; as if we didn't do...something...with the gift he gave to our daughter; as if giving a piece of yourself should be enough to guarantee life and happiness and all good things.

I suppose it's made worse because they are still in the PICU themselves, waiting to hold their new baby boy. And hurting, too.

A few years back, before I decided to go back to school for yet another degree and before I took on a part-time job to pay for that degree, I was at loose ends. I couldn't teach my one little class at the college, as I had planned to until the girls were older, because that's not the kind of job you can take with you for long-term hospital stays. Jörg and I were listing possibilities, and toting up risks and costs for each of them. I think I was probably pretty bitchy with him, as I tend to be when frustrated by his ineffably rational pessimism, which treats worst-case scenarios with more than the sort of willful  blindness that I tend to think is human nature.

Of course, at that point in my life I was spending my time making origami picture frames out of vellum paper, so I think a degree of bitchiness was to be expected.

"Why don't you work on writing something?" he asked, in one of those sweet displays of caring and respect that I tend to forget when I'm getting bitchy because a woman with demonstrably poor fine-motor skills and a questionable grasp of color families should never turn to craftiness to occupy her time.

I told him I couldn't do that. That it didn't make any sense to even try, because every good story has to have a beginning, a middle, and an end. All we had was a beginning, and then one long middle. Was Annika going to be OK? Was she going to be one of those miraculous transplant babies who lives into adulthood, each of them mapped on a gradually less populous chart for longest surviving transplant recipients? Or was this complication, or maybe that one, going to be the one that proved to be the important one, the final one?

I think we don't like to hear unresolved stories. When a stranger hears she has had two liver transplants, they will glance at her uncertainly, "But she's doing OK now?" And the answer, just like the answer to "How are you?" is supposed to be, "Just fine!" Anything else is deeply uncomfortable, like you've been offered a hand to shake, and have instead bared a scar on your butt from a skating accident when you were 10.

So. I guess now is the moment of truth. One mom wrote to me a few months ago that her daughter struggled for years after two transplants, and then the third one came and everything just worked. It's time to see if the same will be true for Anni. She's certainly been through enough. It's time to take the leap, even if I am terrified.

So. As of today, Annika is again active on the transplant waiting list for a new liver. She currently has a PELD score of 11, which is pretty much the same as saying "no way in hell is she going to get a tranplant with a blood type of O." However, her main liver doctor is going to write a letter to UNOS (the organization that allocates organs) to ask for exception points. Her doctor is shooting for a PELD score of 35, which is pretty much the same as saying, "fill your gas tank and pack your bags right now."

The reason that she is asking for such a high ranking on the list is that the complication that Annika suffered in the hospital a few weeks ago (severe hepatic encephalopathy) is fatal about 80% of the time. And they think it was brought on by the GI bleed; and they think it will happen again if she has another GI bleed; and she's been having bleeds about once a month lately.

The surgeon told us a few months ago that he thought Annika's chances of surviving another transplant were about 60%, which, at the time, sounded pretty damn crappy. But I'll take that over 20% any day.

Of course, I know that all those numbers are just rough guesses. Take from them what you will. Jörg will be happy to discuss with you his deep-seated suspicion of the use of statistics in medicine.

I can only tell you that I am in love with the new Julieta Venegas album (Lento, if you choose just one song), because, if your daughter (sporting her new glow-in-the-dark jaundice, in case you had forgotten that her liver is toast) comes down the stairs in the middle of the night to ask why you are listening to music so late, you can answer truthfully that it's because it makes you happy. All those people singing along in a language you don't understand! It's something like happy, anyway.

Comments

[Norah]

Moreena, I'm sorry this is the latest plot twist your story has taken. Here's hoping that Anni is the Goldilocks of liver transplants and that this one will be 'just right.' It should go without saying, but I'll say it anyway...prayers abound for you all.

[chasa]

Infrequent commenter (very), but I've been following your posts since Club Mom...and my heart dropped when I read this. I am so sorry, for you and your family and all that Anni has had to endure. May there be a miracle on the horizon for her, and much joyful music for you to listen to in the meantime.

[Annika]

Well. 60% does sound downright rosy when you put it that way. And this is forward movement, in a manner, which is good. I will just keep sending you love.

[Diane Dawson]

Moreena: Hugs, Love and Strength

[K]

Sending good thoughts to you and your family...the universe owes you one.

[epi]

[hugs] sending good thoughts and thinking of all of you.

[Jennifer]

Oh Moreena. Hugs and blessings.

[Christine]

Ugh, I'm so sorry to hear all of this, My heart really hurts for Annika and your family. You're in my prayers.

[Helly]

Far-off lurker and Annika fan here, saying how sorry she is that you've reached this point and hoping for you all to fly easily through the coming weeks

[Jennifer]

Another lurker here, sending good thoughts, and thinking of you.

[Liz]

Hugs and good thoughts from distant Germany. I'm sorry for this and hopeful for you all.

[kathy a.]

((( moreena ))) thinking of annika, you, your family.

i never thought i'd be hoping for annika's liver to be rated very very bad, but -- i hope she gets a perfect liver, very soon.

xoxoxoxo

[Hannah]

I wish for Annika's liver to come very, very soon, and to be the perfect one for her.

Holding on to the belief you uttered a while ago that Dr. Superina is, indeed, something of a superman and that he will make this transplant be a success.

Love from Berlin, and all my best wishes for Annika.

[Lisa]

Thinking and praying for you all.

[Kimberly]

I've been a reader for a long time but not much of a commenter.

Sending a virtual hug...

[Kyla]

I said "Oh shit." before this had even fully loaded. I gasped when I read the encephalopathy stats. Geez. Nothing like very bleak odds to make slightly favorable odds look positively dreamy. I hope she gets bumped up on the list and that nasty 80 and 40 stay far away from Anni.

[New Kid on the Hallway]

I'm so sorry. I hope she gets moved up that list and a liver comes round FAST, and that the third time is indeed the charm! Sending you all sorts of good thoughts.

[Aimee]

Praying and thinking of all of you every day.

[Mary Kiernan Lee]

%'s don't mean anything. As Nora was being listed for her liver, we were told the chance of her liver spontaneously surviving the virus was 10% and her chances of surviving a transplant were negligible. Keep in your heart that Annika will be the one to beat any odds given her. As always, I will keep her in my prayers.

[Mandee]

Thanks for keeping us posted. Many, many prayers coming your way.

[Carla]

Positive thoughts for you all are en-route from Rome. They're pretty good swimmers, so they should be there fairly soon.

[jessica]

I had to read the middle parts of your post 4 or 5 times because of the big heart drop at the beginning.

Sending you all my love, hope, and prayers for a new liver ASAP.

[Lee]

*hugs*

[Anni Metz]

i'm not even a big pray-er, but i'll be sending a million & one prayers up to the sky for anni until i hear some good news. let me know if there's a place i can send cards, cookies, or anything for you, jorg, and the girls. and make sure annika knows that her "same name" down in atlanta is rooting for her! -anni m.

ps: julieta venegas is a GREAT choice for happy music!

[ETB]

Thank you for this update and for sharing your experiences and strength with all of us out here, Moreena. Prayers, as always, are with all of you.