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.

Monday, November 21, 2005

hunger artist

This morning found me washing blood out of Annika's new favorite blanket, a princess quilt from the ER nurses back home. Last night she stooled blood all over everything in her bed, but, completely exhausted, slept through it all. Even when 2 nurses and I changed her bedding right out from underneath her. The story today is that on Wednesday, when she was scoped and sclerosed for the bleed she had on Monday, they discovered a varix that they could not sclerose because it was too near the sphincter. They are pretty sure that this is the source of the new bleeding. I have no idea why I wasn't told about this rogue varix on Wednesday, after the scope. Maybe they didn't want to worry me? Maybe they thought it was too small to be a real problem? Whatever the reason, I wish that we had been told about it so that we could have been mentally prepared for the possibility of a re-bleed so soon. When you're trying to keep it all together in a crappy situation, preparation is key. Today Annika is going to have a PICC line placed (A PICC line is a semi-permanent I.V. That way, Annika's tired veins won't be subjected to repeated I.V. placement - regular I.V.s just last a few days - and they can also draw blood from a PICC line. Handy when you're on an every 6 hours lab schedule.) They will also begin her on TPN, which is I.V. nutrition. They are starting TPN because... (here it comes) Annika will not be able to eat or drink anything until well after her surgery on Nov. 30th. Holy Crap. The thinking is that eating or drinking anything might increase the bleeding, and they are not able to sclerose the little beauty that is evidently doing the damage right now. Let me just say, Holy Crap. It's already been 48 hours since she's been allowed to eat or drink, and she has been asking at least once every hour about the food situation. She has also been making a list of the foods that she would be interested in trying, if only they would let her eat (including pumpkin cream pie, fresh ginger, dumplings, and turkey). Last night she got a dreamy smile and told me, "I'm imagining ice cream!" Of course, given the Thanksgiving holiday fast approaching, all the "special episodes" on Nick and Disney have been featuring all sorts of food. Great! I seem to remember reading sometime, though, that after a certain number of days you don't feel the urge to eat anymore. Here's hoping. I'm also hoping that they might at least let her indulge in the occasional clear liquid, although right now the list of clear liquids that she's interested in begins and ends with "water." Maybe jell-o will be looking a bit more attractive to her in a few days. If the bleeding stops finally, they will let us leave the PICU and go across the street to the Kohl's House to wait for surgery next week. I do remember, though, that the families at the Kohl's house cook a big meal for Thanksgiving, and the smell permeates the entire house. At least in the PICU she doesn't have to smell the food that she's not allowed to eat. Anyway. Enough whining from me. Annika is doing impressively little whining herself, so I'll try to follow her lead. In the end the blood did not wash out of the quilt. She still thinks it's wonderful, though, and softer from the washing, to boot.

32 Comments:

Anonymous Becca, Jason and Natalie Ketter said...

Moreena- Sending my love as always. Email me, let me know what I can do. I'll bring more Furbies!!! Whatever. You name it. We're only 2 hours away.

11/21/2005 12:01 PM  
Anonymous Stacy said...

Oh Moreena, many prayers are being said for you guys. What a long wait for surgery - I thought they might be able to move it up for you guys.

Yes, preparation (especially the mental kind) is what gets us through all of those really, really difficult times.

Thinking of you guys -
Stacy - Tanner's mom

11/21/2005 12:02 PM  
Blogger liz said...

Is there anything I can send? Any special requests from Anni or Frankie? I feel helpless 'cause I can't bring a casserole and she couldn't eat it anyway.

Big hugs.

Liz

11/21/2005 12:17 PM  
Blogger Tara Marie said...

Moreena, I've been thinking about you and Annika and Frankie....please know you are in our thoughts and prayers and your little Annika is truly an inspiration.

11/21/2005 12:45 PM  
Blogger Running2Ks said...

Moreena, my hugs and prayers are with you. When Anni gets out of this situation, you can have a Thanksgiving for her. I am so sorry you are going through this, and I e-mailed you back. If you go to the Kohl's house, call me and we'll visit.

11/21/2005 12:54 PM  
Blogger ocelot said...

OMG! I had to make a mad scramble to find the current date to figure out how long you're talking about here... that's unfathomable. Well, if you're ever up here, we'd love to take Annika and Frankie for all they can eat at Ella's Deli.

11/21/2005 1:44 PM  
Blogger Jay said...

I will definitely be keeping her (and you) in my thoughts and prayers. Being fed by iv meand you're not necessarily hungry, but combatting the mental habig of eating is actually worse than hunger itself. I'm sure that on top of everything else going on right now, it just makes a horrible situation a little more unbearable. She is a little trooper, obviously, and if there were anything I could do or send, I do hope you'd let me know.

11/21/2005 1:55 PM  
Anonymous Anonymous said...

Bless her little heart! That's such a long time to not eat. The TPN will hopefully lessen her wanting to eat. I hope too that they will ease up on the restriction a little and let her have some clear liquids. I would be dreaming of food!

I feel somewhat better though - knowing you all are going to be there so close to the hospital. I do with they could move the surgery date up. Regardless, I think of you all often and pray for you. I check the website several times a day to see if there are updates! Know that there are many, MANY prayers going out for Anni's successful surgery - and for all of you as well.

(((Moreena)))

tina

11/21/2005 1:57 PM  
Anonymous Anonymous said...

Moreena - would it be possible for those of us here to send cards to Anni? In care of the hospital - that way you wouldn't have to give out too much personal information. Woudl it make her feel any better to receive cards from all over? I would love to send her one and I know others probably would too!

tina (again)

11/21/2005 1:58 PM  
Blogger Jenevieve said...

Yeah, what Tina said! Matt and I would love to send a happy card or letter to Anni... would that be alright?

11/21/2005 2:23 PM  
Blogger candace said...

Moreena - I'm going to ask the same thing... please let me know where I can send things! Again, if you need anything I am an hour or so away. We are all thinking positive thoughts and praying for Annika. And, you know what, it's okay to whine every once in a while. Hang in there.

Candace

11/21/2005 3:15 PM  
Blogger angie said...

Oh Annika, I feel for you not being able to eat for that long....and not eating during Thanksgiving...for a 5 year old!! That is just not right! I wish that they could move the surgery up. My prayers are with all of you. Good luck keeping the food away that will be one tough job!

11/21/2005 3:44 PM  
Blogger Sarahlynn said...

"When you're trying to keep it all together in a crappy situation, preparation is key."

Abso-freakin-lutely.

11/21/2005 3:49 PM  
Anonymous Marisa said...

I can relate tot he not eating. I was not aloud to eat for approx. 4 months due to my varice bleeding pre-transplant. Whenever I went to the bathroom, after I washed my hands I would cup them and drink some water, well....that went for awhile until I was eventually caught...by my mom and we sat and cried on my bed for a bit.

HUGS to You and Anni! I will try and pop a card in the mail this week.

Love, Marisa

11/21/2005 5:04 PM  
Blogger Phantom Scribbler said...

Hugs and prayers for you and your little hunger artist. Please, please let us know if there is anything we could send/do.

11/21/2005 5:19 PM  
Anonymous moirasmom said...

Morenna, many prayers to get through this time with no food! You are right TV is full of Thanksgiving reminders right now...time for DVDs maybe. I will keep your family in my prayers. By the way the laundry soap at our hospital specializes in removing blood and other yucky stuff.
Please take care and know that eveeryone is with you in prayer.
Sue

11/21/2005 5:39 PM  
Anonymous Jamie said...

Oh. Poor darling. I can't imagine having to tell her she can't eat. I feel for you, Moreena. I'm praying for you all.

Please take care.

11/21/2005 5:48 PM  
Blogger Bettie Bookish said...

Yes - where can we send cards? And tiaras. And magic wands. And, when the time is right, perhaps a gift certificate to her favorite restaurant.

Just so you'll know, when I was 9, I had a surgery that required me to abstain from all foods for more than a week. It wasn't the worst thing. In fact, today, I don't even remember being hungry.

~Elizabeth - another voice in the chorus of prayers and good wishes for all of you

11/21/2005 7:31 PM  
Blogger corndog said...

Another bloggy buddy chiming in with a desire to do more than send good thoughts and prayers. Although if that's all we can do, we'll just keep on keepin' on. And I know you're trying to be as big of a trooper as Annika, but if you need to whine, this seems like the perfect place to do it.

11/21/2005 7:40 PM  
Anonymous Beanie Baby said...

Oh, wow. Nov 30? That's more than a week!

*sigh*

I get cranky if I can't eat in eight HOURS, let alone eight days.

Please let us know if we can do anything.

11/21/2005 7:42 PM  
Blogger trisha said...

Of course Anni would look at the bright side of having her blanket washed! What an amazing little girl.

Love to you all, M. I wish I ever had more to say than that.

11/21/2005 8:23 PM  
Blogger Sarah said...

Moreena, my thoughts and prayers are with you today and always. I am so sorry that your sweet little Annika has to go through all of this. Please let me know if you need anything. We are only 30 miles away. I don't know how visiting goes in the PICU. I know they used to let Mary in, but I think that was because she was Anna's sibling. In the mean time, give Annika hugs from all of us.

11/21/2005 11:49 PM  
Blogger Scrivener said...

I'll join in the chorus of warm thoughts for Annika and you and Jorg and Frankie. I'm so sorry you have to go through this.

I've never been denied food for medical purposes, but in my experience after a couple of days of not eating, the desire for food certainly does abate. I've never gone for well over a week without food though. Is she getting some kind of nourishment through the IV then?

11/22/2005 9:10 AM  
Blogger Sue said...

praying for all of you...

11/22/2005 9:16 AM  
Blogger Yankee T said...

Please do let us know where to send cards, etc...and please know that we are out here, pulling for all of you, and wishing you some peace and quiet in the health world.

11/22/2005 10:35 AM  
Blogger jo(e) said...

LIke everyone else, saying prayers and sending hugs ....

11/22/2005 10:37 AM  
Anonymous Becca said...

For those of you wanting to send cards...go to Children's Memorial's webpage and you can send a card from there. When my daughter was inpatient she received them too and the giftstore's staff handwrites each card and puts stickers on them for the kids. Here is a link. http://www.childrensmemorial.org/ecard/default.asp

I don't know the room #, but if she is in the PICU, you can just put that and they'll find her.

11/22/2005 11:04 AM  
Blogger halloweenlover said...

Poor little love. I am also sending positive thoughts and prayers you way. Hugs, and I hope the days pass quickly and that she is feeling better soon.

11/22/2005 2:42 PM  
Blogger purple_kangaroo said...

Oh, hugs! You could try some hydrogen peroxide on the stains--that's what we used to use to get blood stains out of white lab coats. I'm not sure if it might bleach the fabric, though, so you might want to test a little corner first.

11/23/2005 1:19 AM  
Blogger allison said...

Just more prayers for you all...

11/23/2005 9:55 AM  
Anonymous Rowan said...

I wish I was in Chicago so that I could march right down there and give you a great big hug.

That's all I can say right now.

11/26/2005 9:34 PM  
Blogger Michelle said...

I checked up on your little one from Nataliebear.com! The picture of the girls is priceless. It's amazing how photography can convey so much.

I hope everything starts going your way and healthier times are up ahead!

12/12/2005 12:20 PM  

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