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.

Thursday, November 17, 2005

Hurricane Annika

Annika is pissed. Seriously. Her wrath is scary, but also beautiful, like watching a hurricane on satellite or a volcano erupting. I know that she is only making things harder on herself with her rages, but on the other hand I feel like high-fiving her, "You go, girl! Don't take crap from anyone without fighting back!" I had been telling her that we wouldn't have to go back to the hospital until after Thanksgiving, but here we are anyway. At first she kept asking me in a confused tone, "Did we have Thanksgiving already?" But as soon as it sunk in that this was an unscheduled visit, she's been hmmmppphh'ing around with her arms crossed over her chest, the very picture of irritation and disapproval. Then there's the fact that lunch today will be the first solid food she's been allowed to eat since Monday at lunch (when she had all of two ears of corn). She wasn't allowed to eat or drink anything at all for 54 hours. Finally, last night she got to progress to liquids. She had 3 cups of ice cream for dinner last night. Not bad, but not all she was hoping for.   And then she's on her third I.V. This third one is in her left hand, which makes most activities difficult as she is wholeheartedly left-handed. And the blood draws have been every 12 hours, and since she had two I.V.s in her favorite blood draw veins (the beloved antecubitals on the inside of her elbow), she's had to have the blood drawn from her hands, which she hates. Yesterday she had reached the point of such anger that she wouldn't even let the nurse flush her I.V. with saline to make sure it was still working before she went back for the scope and sclerosing.   It's strange to see the mixture of maturity and babyhood she shows right now, like she's struggling with whether it's better to be a grown-up or regress back to infancy in this stressful situation. When the phlebotomist shows up to draw her blood, she is almost always quite calm and matter-of-fact. This tends to lull the phlebotomist into thinking that she has hit upon a dream patient. But then Annika holds out her elbow, turned up, to indicate where she wants the needle to go. When the phlebotomist reasonably explains that those veins are being used for I.V.s already, that's when all hell breaks loose. She curls into a ball; she uses her shockingly strong legs to kick out at anyone approaching her like a porcupine shooting quills at a predator; she stuffs her arms under the material of the polyester puppy pajamas the hospital provides; she screams, "Get away! Get away! Get away! Get away! Don't touch me!" in a voice loud enough to let me know that the "Stranger Danger" talks have gotten through, even if she's misappropriating slightly. So we try to calm her down. I stroke her back and all the needles and tubes on the bedside table are wheeled safely away from her. We explain the situation in calm voices. We try to get her to talk out her feelings. We offer to let her "draw blood" on Furby. When we ask her why she is so scared about having her blood drawn someplace else, since she is so completely OK with blood draws in her antecubitals, she explains that "It is just too dangerous!" The problem seems to be that she has developed into a creature of extreme superstition. For everything to go smoothly, they have to go into her Lucky Veins. She has developed a long inner list of the rules that must be followed for a successful hospital stay, and flexibility is not an option. Of course, it doesn't help when we get a phlebotomist who needs to have a short course in "What NOT to Say to a Freaked-Out Child in the Hospital." This one rolled in with her loud voice and unexpectedly quick moves. When Annika began fighting, she threatened her with, "I'm going to have go bring in the nurses. They will hold you down and I will send your mommy out of the room. That will be really scary." I probably should have just sent her away right then and there and asked for someone else, but I just let it go. I did, however, lean down and whisper in Anni's ear, "I'm not leaving you, Annika. No matter what." After a few more minutes of struggling, the phlebotomist got completely exasperated and declared, "Annika! Come on! This isn't going to hurt!" At this I finally turned on her: "You're not being very helpful. Don't tell her it's not going to hurt, when it very likely will! It's a needle, going into her skin, in the sensitive hand area. If you tell her it's not going to hurt when she very well knows it will, don't go acting all shocked when she doesn't trust a single word you say! Geez!" This is the first time we have ever gotten someone who clearly didn't know how to talk to kids, though. To her credit, she stepped back after I lost my temper with her, and just kept quiet while I tried to work Annika back down out of her full-blown panic. Then she did a great job getting the vein quickly. If I thought the blood draws were dramatic and stressful, it was nothing compared to the whirlwind of rage that exploded when I took her back to the OR room where the doctors tried to put her under. As she was finally going down (after needing way more sedation than they thought she'd need), I kissed her sweaty brow, told her I loved her, and lay her down on the table. Dr. Emerick, the GI who was going to do the scope and sclerosing, walked me out of the room. My arms were shaking a bit from the effort of trying to restrain her. "She fights soooo hard," I said, almost apologetically. "That's why she's still with us," replied Dr. Emerick. Now normally, I don't much go for these types of platitudes, "She'll get through this! She's a fighter!" So, what? Those who don't make it didn't fight hard enough? Gave up? I don't think so. Sometimes these kids are just handed more than any little body can handle. But this time, I took Dr. Emerick's words and held them tight as I headed out to the waiting room. Any port in a storm, as they say. The scoping revealed that she had developed one new varix since the last sclerosing, and that was the most likely source of this new bleed. The fact that there was only one new one was good news. However, it was another huge bastard, grade 4 (the scale is 1-4, with 4 being the worst). It could certainly have been much worse, lots of them rather than just one, or she could have developed varices in her stomach, where you can't sclerose them. On the other hand, sclerosing varices usually gives you a 2-week window of safety (no bleeds likely), which is why Annika had been on a schedule of sclerosing every 2-3 weeks up until this point. Since she was scheduled for the shunt surgery on the 30th of this month, the doctors decided to give her poor little throat a break. Thus it's been 4 weeks since her last session of sclerosing. Just 4 weeks, and she was bleeding again. If there was any lingering doubt in my mind that maybe we could avoid this shunt surgery a bit longer, this certainly proves otherwise.

9 Comments:

Blogger liz said...

I know it's hard to see her fighting so much, but I'm impressed with how strong and vibrant and confident she is. Her ability to stick up for herself is truly wonderful.

Lots of hugs!

11/18/2005 1:07 PM  
Blogger Phantom Scribbler said...

(o)

I don't know which impresses me more, Annika's spirit, or your restraint. I would have been so tempted to take out all of my fury on that clueless phlebotomist.

11/18/2005 2:17 PM  
Blogger Running2Ks said...

What a scary experience (and a terrible thing the phlebotomist said!)

I think Anni is my hero. She is amazing. And I am so glad you are her strong and protecting Mommy.

11/18/2005 3:00 PM  
Blogger Yankee T said...

Bless you, dear Moreena. I'm thinking of both of you as you fight in your own ways.

11/18/2005 3:57 PM  
Blogger angie said...

I am so amazed with Annika's strength. You have all been through so much. I think you handled the phlebotomist very well. Every now and then you run into one "of those" at a children's hospital. Thank God most of the people that work there are AMAZING!! We'll be with you in prayer on the 30th.

11/18/2005 5:59 PM  
Blogger Amy said...

My family has come accross a few of "those nurses". It certainly keeps one on their toes. ;-)

I am praying for your whole family. Thank you for letting us share this time with you.

11/18/2005 7:25 PM  
Blogger Amanda M said...

Gotta love that she's a fighter and knows what she wants! Better angry than to have all the fight knocked out of her. It's when they turn into limp, passive leaves with no fight at all that I start to get really worried. (Don't get me wrong - I am worried for her, but this post is actually pretty reassuring to me.) Grade 4 varices suck though. All our love to you and yours,
Amanda, Aunt to Katie, age 7, BA, kasai

PS Super interesting about the superstitions...all the little rituals and routines that kids like to make them feel better, in the midst of so much unpredicability.

11/18/2005 11:21 PM  
Blogger Jenevieve said...

Moreena, how can you make us laugh and cry in one post?

I'm praying for you and Anni.

11/19/2005 10:17 PM  
Anonymous Rowan said...

Strong willed kids. I've been told often that Kajsa's stubbornness will take her far. I learn from you each time I read. Now I know to look out for developing superstitions to evaluate their helpfulness. I never would have thought of that. I'm so sorry about the proliferation of varices. Hopefully the sugery will be a wild success.

11/26/2005 9:09 PM  

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