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October 15, 2008

Comments

Hannah

I came to read your blog when Annika was batteling infections after her vent surgery. Remember well from back than she had several issues with the drugs :( - must be very hard to see her like this.

Although, of course, it is in a way good to hear she is no longer paralysed and not always completely knocked out.

Hope that every day brings improvement; although it's surely a long and possibly bumpy road, a couple of good (PICU-good, that is) days in a row sound - good. (Now that's a logical sentence...)

Love,

Mary Kiernan Lee

That is an awfully strong will which serves her well.

Hannah

not vent surgery - splint!

paige

Oy--she can't win in this category, can she?
Glad you are there for all-important hair stroking and hand-holding...

moreena

Hanah--I know what you meant! And, yes, she extubated herself after the shunt surgery when everyone thought she should still be deep under from the anesthesia. Then the next few months were a constant battle with getting her sedated enough. Then the PICU psychosis. Etc.

We kind of suspect that she was actually not completely knocked out on Monday night, when she was still paralyzed. It's so hard to tell when they are paralyzed, which is why we're hoping they'll hold off on the paralytic as long as she's not doing the boogie in her bed or something else dangerous for her abdomen (or her airway).

Val

So you get to interact with your Annika a bit more now, then--That's good. I'm glad things are going well, and I agree with Mary about her strong will.

Hannah

(Sorry for complete lack of terminology...)

Kyla

KayTar is resistant to some sedation, too. She's actually having a hearing test in the OR, because they can't knock her out without the big guns. I'm sure adding a nearly open abdomen and fragile airway to the equation makes it a wee bit stressful.

Of course, I bet you're really really happy to be catching glimpses of your bleary eyed girl.

jenevieve

Man, wee ones are always difficult to dose, and when you add a fighting spirit (um, plus liver disease. details) into the mix, I'm just glad she's surrounded by awesome docs.

package approaching completion! are you suuuuurrrre Joerg doesn't want anything? (I tried to slip in a wee bottle of whiskey, but the dang ol' customs people say No).

Catherine

So glad for the update, Moreena! Hoping Annika gets some rest.

xo Catherine

Shelley

Thinking of you this morning and hoping she can find some middle ground... more of a cozy resting spot as her body heals.

Marisa

Sending you all HUGS!
Thinking of you so much!
Stay Strong Annika!

Norah

Maybe Anna will sense what a perfect, dreary, chilly day it is in Chicago...nothing better to do than sleep on a day like this.

Continued prayers for all of you!

liz

Glad about the lack of paralytic, so sorry Annika's not sleeping through this.

Hugs!

Susan

Thinking of you, hoping the drugs and the healing all balance out well and quickly.

jessica

Yay for no more paralytics...I'm so glad she continues to do well. Each day will get better and better for her. And you, too.

Becca

...ketamine...dilaudid...morphine...precedex...methadone...paralytic...

Now you're talking my language :)! Don't get me wrong, I don't miss those days...all 23 of them where Natalie was still open - but Moreena, I can't get over how calm you are. Yes I can, who am I kidding, it's PICU strength. You-we've- been down this road before. Annika gets her strength from her fabulous parents.

Things are progressing well - holy crap I sound like I work there!! I check daily - you've become my wonderdrug! And while I can't be there, you are in my prayers and in my heart. Natalie and I talk about Annika's progress openly. And she's got questions. But mostly, she's got pride. Pride in her friend, Anni.

Blessings and love to you.

Amy

But I'm thinking if the biggest deal right now is pain management and not some major transplant issue... that's not too bad, right? (Asks the person who does not have a child lying in the PICU in pain...)

Tanya

So glad that things to be getting better each day. I was wondering earlier, how is Frankie coping with everything that is going on? Know that there are many of us who are thinking and sending good wishes to all four of you.

xx

Maggie

still praying. I hope Annika doesn't react to ketamine the way my cat did--she got snarly and would have bitten (not her usual style) if we'd been close enough. Sounds like things are looking up.

moreena

Amy--you are totally right. Everything looks good, liver-wise. And, really, she doesn't seem to be in pain at all (no screwing up her forehead or making other signs of distress). But we would really rather have her mostly asleep right now with her belly still partially open. The less movement, the better. And that's why the paralytics are still on the table, if need be.

Tanya--I need to do a Frankie update, don't I? She's a pretty resilient kid, just like her sister. I'm planning a visit, if possible, this Saturday.

Maggie--me, too. So far she seems pretty chill, but it's hard to know for sure how it is affecting her. I think she's OK, although she's on soooooo much stuff right now.

kathy a.

wow, that's a lot of meds! wonderful that things are looking so good, liver-wise.

ppb

Oy, a lot of drugs.
I hope things continue to get better!

Jane

Thanks for the update. I'm glad things are still going well. I hope they find the right med mix to keep Miss Anni comfortable.

Lauren

Hi Moreena,

I'll be in town on Friday and I'd love to stop by. Let me know what works for you, we can figure it all out. Still praying - I'm so glad to hear that things are going well for you all.

Love, Lauren

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Falling Down, November 2004

  • Balloon in hand, my 4-year-old
    twirled across the kitchen floor,
    singing nonsense words
    in her own key.
    "It's my gift!" she declared
    to the world at large, which
    was really only me,
    sitting at the table. Enough
    twirling, and she lost
    her balance, tumbling
    to the floor in a theatrical
    slapstick of elbows and knees.

    She lay on her back
    for a few seconds,
    staring
    at the textured ceiling
    with the mysterious
    spaghetti sauce stain.
    Suddenly she
    began
    flapping her arms and legs
    there on the floor, as if to swish
    the imaginary snow
    into a snow angel.

    "Falling down is also a gift!" says she.

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