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.

Wednesday, May 17, 2006

6 long months

I won't take time to do a long post since tomorrow morning is Annika's train trip with her preschool class. Of course I'm going along, and Annika's super-nice preschool teacher is bringing a fold-up wheelchair for Annika to use for the long walk from the train station to the park. She's been looking forward to this trip for a while, although I haven't been talking it up, just in case she had to be in Chicago instead. So I should get off to bed and get a sufficient amount of sleep to avoid falling off a train platform somewhere. Annika's lab results last week were just awful. I plugged her lab numbers into the PELD (Pediatric End-Stage Liver Disease) calculator over at the UNOS (United Network for Organ Sharing) website. The PELD score determines where kids under the age of 12 are on the waiting list, with the sickest kids having priority (the higher your PELD score, the higher your estimated risk of mortality at 3 months). The average PELD score at time of transplant is about 18. A PELD score higher than 30 usually means that your liver is pretty well FUBAR (since it's all about acronyms in this paragraph). Annika's PELD was 23. I did all sorts of googling to try to figure what, exactly, this meant for her. Mainly I was trying to find out the big answer: if the PELD score is based on the estimate of mortality at 3 months, then what's the estimate associated with a score of 23? Especially given that her surgeon still wants 6 more months before he feels she has a reasonable chance of surviving another transplant? I didn't find that answer, exactly, but that phrase, "3-month risk of mortality" kept popping up on every document I found, and it was just driving me batty. She needs 6 months, and I don't know how much of a stretch that is going to be. I do know that 23 is not like a panic PELD score, but (I've written and erased the ending to this sentence 3 times now, so I'll just go with...) but I don't like the trend and I don't like this situation. The good news is that we repeated her labs this week, after she'd been on her new antibiotic regimen for 5 days and they looked better. Not champagne-popping better, but enough to get me to lay off Google for a bit. Also in good news is that it turns out that Annika is (almost) in the most resilient age group, according to the numbers. Of all age groups, 6-10 year old children look to have the lowest mortality rate associated with transplant. I'm throwing this up on this blog, because I figure this is the place where the squicky medical details live. I'm still trying to figure out how to work the new blog. There are some high-powered bloggers over there, and I'm working out how, exactly, I fit in.


Blogger Chana said...

sorry to hear that her PELD numbers are high..let's be hopeful that 6 months will be achievable without much struggle..i wish i could say something better than that but i got wishes that i can send you a ton off..
have a great time in tomorrow's field trip. have fun and enjoy..

5/18/2006 12:21 AM  
Blogger liz said...

Have fun tomorrow.

Praying for all the time you need.

5/18/2006 12:51 AM  
Blogger Jane Dark said...

Hugs, Moreena. And I like this blog and the new one very much.

5/18/2006 3:01 AM  
Anonymous peripateticpolarbear said...

Oh Moreena....just not right. Hopefully it was a fluke, bad hair day by the technician, doctor needs new contacts, something.....what does the doc think?

5/18/2006 6:27 AM  
Blogger Bettie Bookish said...

Oh, enjoy your day today. And stay off that Google, Moreena.

As for wher eyou fit in on the other site, you rock. Hard. You're an amazing writer.


5/18/2006 7:38 AM  
Anonymous Anonymous said...

I'm praying for the six months you need. Or possibly the doctor will see a need to move up that date? Anni is certainly resilient! You can bet on that!!

Have a wonderful train trip!


5/18/2006 7:40 AM  
Anonymous Miche said...

I hope all involved have a fabulous train trip and fun in the park!

Our thoughts are focused on a Happy Healthy Annika with a liver that's a 100%

5/18/2006 7:48 AM  
Blogger Stacy said...

Moreena -

If it's any consolation, Tanner's PELD held in the high teens low twenties for over 3 months. In early December, before our original team would list him, it would have been 17 - 19. He was transplanted at 19...although he did have a 4 week stay at 25.

I know that doens't make it easier, but I know that there are lots of kids who hang out higher on the list for long periods of time (wasn't Jackie's PELD over 30 for almost a year on her 2nd transplant?). And, if anyone can do, it's that tough cookie you have.

Thinking of you guys...

PS - Love the new blog!

5/18/2006 8:08 AM  
Blogger ccw said...

I hope you and Annika have a wonderful time on the school trip.

Like liz said, praying for all the time you need.

5/18/2006 8:27 AM  
Anonymous Becca - Natalie's mommy said...

We just got off of 6 west. I hate that place and I hate what Annika and you continue to face.

I am here if ever you want to chat about PELD scores or anything else!

5/18/2006 8:29 AM  
Blogger Mike said...

I think it's worth talking about this on the new blog, if for no other reason, than because people need to know how to recover from medical Googling. Aside from total abstinence, how do you sleep after putting a medical condition (any medical condition) into Google?

5/18/2006 8:32 AM  
Blogger Piece of Work said...

HOpe the train trip is a huge success. I'm sorry for all the worry about numbers and timing, but I'm hoping that her numbers continue to improve.

5/18/2006 9:06 AM  
Anonymous Anonymous said...

I hope the train trip is great! Danny loved it when his preschool did the same thing.
Congrats on your new blogging job, what a perfect fit for you!
Here's hoping her labs start looking better.
Thinking of you and praying all the time,
Mary O.

5/18/2006 9:19 AM  
Anonymous Anonymous said...

As always, I praying for the day in the long distant future when Anni decides that her hair needs to be a shocking shade of fuschia.

Hugs and many, many prayers,
tammi k

5/18/2006 10:48 AM  
Blogger Jess said...

Thinking of you all, and praying for time.

The new blog is good...It makes me happy to get to read you more often! I don't comment much, but I'm definitely playing along at home, and am so excited to have more! As to where you fit in...You'll find it. Just do your thing. :)

5/18/2006 10:53 AM  
Blogger Phantom Scribbler said...

Oh, Moreena. Just the idea of an end-stage calculator is squicky enough. Just thinking of you sitting there in front of Google is enough to break my heart.

I hope Annika has a great time on her field trip.

5/18/2006 10:58 AM  
Anonymous kathy a said...

sounds like an excellent field trip!

i don't know the liver squickies personally, but mike's got a good point about google madness. both my nephew and my dad had pretty nasty cancer things going on, and -- i dunno, it helps to take what you need and put the rest in a box somewhere, i think.

here's what i think about mortality rates: they are just numbers. they do not tell you a damned thing about what will happen with *your* loved one. they tell you to be worried, and then leave you hanging.

you have to live every day as well as you can -- do what is prudent and kind and smart and fun, as best we humans can. you and jorg and frankie and annika are doing that!

hugs, love, and good thoughts. xoxo

5/18/2006 1:43 PM  
Blogger Rev Dr Mom said...

Hope the train trip is/was wonderful!

And big hugs for all the rest. I hope it helps even a bit to leave the squicky stuff on the blog (not that you can ever completely leave it, I'm sure.)

5/18/2006 1:58 PM  
Anonymous kamlesh said...

Just came across you blog- and wanted to wish you strength and luck and all the best. What you are going through must be so hard. God bless you, your sweet girl and your whole family, and give you the time and help you need.

5/18/2006 3:16 PM  
Blogger Amanda M said...

Hope the train ride goes really well! Hope those scary numbers come back down!!

The whole "three-month" mortality rate was news to me....sigh.

Love the new blog, am semi-addicted already, it's the expectation/joy around getting to read your writing 5 times a week plus!!! Woohoo, lucky us.

5/18/2006 3:24 PM  
Blogger profanglophilia said...

For what it's worth, I like the new blog... you don't need to be a power blogger... you have plenty to say and write beautifully as it is. Just be yourself... that's what keeps us reading.

5/18/2006 6:53 PM  
Blogger susan said...


I hope the trip is a smashing success...and as always, thinking of you, anni, frankie, jorg, wishing for time and medical luck.

5/18/2006 7:54 PM  
Blogger Liesl said...

I'm sending prayers that you get all the time you need, and better lab numbers.

And I hope you have a marvelous trip!

5/18/2006 8:27 PM  
Anonymous Kristen (Havalah's mom) said...

Hey Moreena

23 is a pretty decent PELD you're right. I'm wondering which of Annika's labs are cruddy enough to give her that score? I'm guesisng it's not her bili ... and I know it's at least partially her albumin ... how about her pt/inr? I suppose with her bleed issues, that's probably a number that's always high for you. When Havalah was first listed 23 was her score, mainly because her pt was high, and pt weighs in heavy on the PELD. Her score went down a few weeks later after vitamin K helped her out. How is Annika doing in general? While i don't know, I would think that if she absolutely needed a transplant sooner, that they would change the time frame. I don't know their reasoning but I Do know that timerames at the hospital are never set in stone.
I hope you guys have a really great time tommorrow. Kristen

5/24/2006 4:16 PM  
Blogger Kevin said...


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