morning with genny

Another mostly uneventful night. She had a nose bleed, which they packed. After the scare with her blood pressure being too low, now it's always too high. The doctor explained to us that the capillaries in the nose are extra-sensitive to high blood pressure.

Well, I'm guessing I'd have high blood pressure, too, if my abdomen had been left completely open (uh, wait a minute surgeonguys, i'm pretty sure you're forgetting something, aren't you?), and I had tubes stuffed everywhere except my butt, and then some nurse gets the big idea that rectal temps are the way to go.

Despite the peeing, which is still awesome, Annika is still gaining fluid weight. Her body has to rid itself of some of that fluid before the surgeons can close her up. Dr. Next-Next-Up (Dr. Superina's attending's fellow) told us that the goal of closing her on Monday or Tuesday is definitely out. Most likely, they'll have to take her into the OR again on Monday just to change the abdominal dressing.

She's still needing transfusions on a daily basis ("thank you blood donors!" says my broken record). But they've been able to go down some on her ventilator settings, which bodes well for her lungs.

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This morning's nurse is Annika's old buddy, Genny. Annika made her an "I Miss You" card a few months ago, complete with popsicle stick ornamentation. We dropped it off for her at the front of the PICU after a clinic visit. I'm pretty sure that Annika wasn't thinking of this particular way to get to spend quality time with one of her fave nurses.

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It's hard to know what to do with yourself in the PICU. I mean, you can't leave. No way can you leave with your child in critical condition. Even if she is stable. I can't leave, anyway. But there's just not much you can do. I'm not even sitting right at her bedside, given that the nurses need to be able to get to both sides of her nearly all the time.

Some parents might choose to hold her hand as much as possible, and talk to her in the hopes she might hear and take comfort. But I'm only getting up to gently rub her head every couple of hours or so.

For one thing, I still have my cold. So I'm not exactly eager to get up in her face, even with my mouth and nose covered with a face mask, and my hands well washed.

For another thing, I don't want her to wake up. Not even to hear me whispering love words to her. I know the nurses have to talk to her (common courtesy does require at least a heads-up before taking a rectal temp). But I also know that there's nothing like a parent's voice to bring a child up out of sleep.

Yesterday I decided to watch some of my old movies of Annika and Frankie to cheer me up. Of course, I had them rolling while the nurse and the respiratory therapist were suctioning out her breathing tube, and debating whether she was breaking through the sedation or not (always hard to tell for someone paralyzed). So I ended up crying a little instead.

But I did make one once specifically to remind a friend whose daughter had just been transplanted (in 2006) that better things were on the way. So here it is, again. To remember why we put her through this.

Comments

[Amy]

Hang in there, girls. Better times are definitely making a come back!

[Elena]

I hope for the best and I suggest knitting, my daughter had a tiny surgery and it is the only time I knitted in 25 years. The activity was for my daughter but I ended up doing it. Made with 1 toilet paper roll, 4 popsicle stick and tape. The pink ''ribbon'' I got is not very useful... real knitting would have been nice

[dragonfly]

Glad the night went mostly uneventfully. Sleep well Anni while your body heals!!

[MKH]

You are amazing! Hope everything continues to improve (and that your cold gets much better soon).

[Jenevieve]

Still here, thinking and praying and wishing of/for/on behalf of you guys.

[Sarah]

That was a beautiful video Moreena!

Still alway thinking of you guys, and praying.

[Norah]

Watching that video makes me realize I don't have enough twirling in my life. I love it. And I remember when you posted that originally a few years ago...it started my love affair with Dar's music. Thank you! :)

Prayers for continued healing and for Anni to get rid of that fluid!

[Karen, Molly's Mom]

Sometimes just being there is what is important, you already knew that, but maybe just needed to hear it from someone else. Hang in there. Thanks for the video. Beautiful!

Continued thoughts and prayers.

[Lauren]

I love seeing pics of Anni when she was younger. She has such a great spirit and personality! I can't wait to see you all again soon!
Love, Lauren

[ppb]

What a beautiful video.
here's hoping for some fluid leakage soon! er, not leakage, but peeage, or well, whatever it is her body is supposed to do to get rid of that extra fluid.

[Hannah]

I remember you posting this video - for a kidney transplant of a little gilr with a beautiful Swedish name starting with K., I think.

And I remember that it convinced me completely of why children (and adults) are put through the horrors of endlessly seeming (P)ICU-stays - not that I needed much convincing, but this video is such a strong, hopeful messenger of the better times ahead.

Today, this beautiful video makes me think of an Annika without terrible pains in her bones, without breathlessness and clubbed fingers and declining energy.

And still I cannot imagine just how heartbreaking it must be to watch her paralyzed on this airbed, even if you think of the much better times that hopefully start soon for sweet Annika.

Thinking of you all.

[elle]

Here's wishing you all the bluest sky...

xo

[Kyla]

That video! Frankie was a BABY! Anni was practically a baby! Oh, my heart. My two favorite parts were little Frankie dancing behind Anni and her friend towards the beginning and Anni spinning at the end. I just love your girls.

"and I had tubes stuffed everywhere except my butt, and then some nurse gets the big idea that rectal temps are the way to go" Ha HA! My BP would rise, too.

Here's to plentiful diuresis in her future.

[Vicky]

Here's to tomorrow being a better day! Wishing plenty of pee-age for Annika, that she might be closed back up again. And wishing you a peaceful day, too.

[Jane]

As I watched that video, I could picture the next video in my head - 2, then 3, then 4 years post this transplant. In that video Anni will be solidly a 'tween then preteen. She'll be all grown up (so she thinks) and she'll roll her eyes at every word you say and she'll laugh with her friends at how uncool parents are...and that will be the sweetest video EVER!

Rest and heal, Sweet Anni. Better things are ahead, indeed!

[Phantom Scribbler]

Should we send you crossword puzzles? Sudoku? Trashy novels?

[Laurie Probsdorfer]

I remember when you posted that video too I think. Such a wonderful gift. I hope it's giving you the same hope it gave them. Anni WILL be twirling and dancing again soon...I'm sure of it.
Much love and more prayers for you all.

[bj]

There's so much joy in Annika, Morena. It's a beautiful video.

[Miranda]

I love when Frankie and Anni are dancing together. The adoration in Frankie's eyes as she looks at her big sis make my breath catch in my chest.

Take care, Moreena.

[moreena]

Kyla--the little girl dancing behind Annika and her friend (Riley) is actually Riley's little sister, Shelby. They are also the two girls playing in the leaves with Anni and Frankie. Shelby has the same liver disease that Anni was born with, and will likely need her own liver transplant some day. Shelby's Mama and I have often remarked how many similarities Anni and Shelby share, including big blue eyes and a big ole loveable streak of stinker.

[anon]

thanks Lord for the better things that are happening daily!

[elswhere]

I remember when you first posted that video. Cried, then, crying now. I'm just a big old...um, whatever somebody is who is a big crier. I'm that.

Wishing you, and Anni, the bluest skies.

[Academic]

(hugs) Moreena. Still praying for you and yours.

[Charlise]

Not sure it is much help - but having been on sedation and paralytics I can assure you that she won't remember a thing. The versed and other drugs they give her between now and when she wakes up will make it all a fog. She may have some very strange dreams (I dreamed about mountains of mashed potatoes and running away to sell hockey tickets) but she won't remember ANY PAIN. Apparently I woke up several times...and don't remember a thing.

[amy]

Charlise, that was a wonderful thing to have posted.

Go, Annika's kidneys, go.