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

[Susan]

Moreena, I'm so sorry this is the latest twist in your story....I'm joining everyone else is sending wishes into the universe for the transplant to work just fine this time.

[Sarah]

I have been reading the blog for a long time, but have never commented. I have to, at this time, send my very best wishes, the equivalent of a hug.

[liz]

May Annika outlive you, may you live to see her children have children.
Hugs and more hugs.

[Jane Dark]

Hugs and prayers, and thank you for the update.

[Ginny]

Moreena, I am so sorry for the bad news. All of you are in my thoughts and prayers.

[Eileen]

I'm a long time lurker to your blog, and I just wanted to let you know that I'm thinking of you, Annika and the rest of your family. Sending good thoughts your way.

[Lisa M]

I am so sorry, for you, Anni, Frankie and Jorg. I'm praying, wishing and hoping for just the right liver to make it's way to you.

[heather]

I'm sorry, I'm sorry, I'm sorry

holding hopes in my heart for Annika

[ppb]

I'm holding all of you in the light and praying that Anni is goldilocks!

[halloweenlover]

I truly believe that this little super girl can beat any odds, no matter that numbers. Here is another virtual friend sending positive thoughts and perfectly matched livers your way.

[Val]

Everyone who reads your words here comes to love you, Annika, and your entire family, Moreena. We will be here with love and prayers as Anni's story moves forward.

[Uccellina]

Your little girl has been so amazing thus far, I can only believe she will continue to amaze. I hope that new liver comes soon, and that it's perfect for her.

[paige]

Damn it.

Damn it.

[tanya]

Praying God's blessings for Annika (and family, of course). I've read your blog for a while now and just want to say that you are a strong, strong woman! Annika has an awesome mommy!

[Jody]

Oh Moreena.

I hope she gets the fastest jump up the list EVER. And that the third time really is the charm.

And that Cliff and his wife get to hold their baby boy any second now, too.

[Michelle Jack's Mom LF]

Praying for Anni as always, that the 3rd time is the charm, that she gets the perfect liver so very quickly!
(((hugs)))
Michelle

[Pronoia]

Thinking of all of you.

[Susan]

More good thoughts pouring your way from our house....

[vanessa]

Oh...a thousand hugs and prayers.

[elswhere]

(o)

[Amelie]

Thinking and praying for Annika and all of you.

[Kathryn]

Praying here as are both my congregations.

[Andrea]

(moreena)

(annika)

[Rev Dr Mom]

Hugs and prayers and good thoughts...for all of you.

[Stephanie in AR]

I've been reading since the Club days but seldom comment. Several years ago my mother was a donner & most of the recipients were in your part of the world. It has been beautiful, sad, and hopeful to read how much a donation has meant to your family. I am praying for Anni and for her future donor's family. Praying for strength & peace & comfort. There will be so much before there is healing for everyone involved.