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.

Tuesday, September 06, 2005

what are those circle things under your eyes?

Title: Annika's first words to me this morning. It's strange to be so caught up in worry for your own child when so many people are dealing with tragedy on a grand scale. Sunday morning on the medical jet from Dallas to Chicago was the first opportunity I had had to catch up on the news, as Annika was involved in some lengthy conversation with one of her paramedics and so left me time to read the paper. Of course, I have not been watching the news in the hospital room with Annika right there and old enough to understand sorrow when she sees it. So I was pretty behind on events. Needless to say, I was shocked to read the accounts and shocked to learn that help had been so slow to reach those affected. But it's strange. Looking at Annika strapped to a gurney with monitors attached and I.V.s flowing, I realized how lucky we were to have access to this top-notch medical care. But yet, I didn't really feel all that lucky. The feeling is almost something like guilt that, despite the much more desperate suffering of others so nearby, you still feel angry and frustrated and sad that this is happening. And reading the accounts of parents who sent their children off, or left them at hospitals, hoping that they would be better off, really touched an emotional nerve. I am missing my Frankie dearly. The very idea that sending her away from her mom and dad is somehow better for her seems insane, but it is undeniably true. We are stressed here, and busy trying to entertain Annika, who is confined to her bed. Frankie would be seriously unhappy here, unable to run around and surrounded by tension and alarms beeping at all hours. I wonder what her little 22-month-old brain is making of this sudden turn of events. Still, I know that I sent her off to be with family who love her very much and are giving her the best care and attention. I talk to her on the telephone at least once a day, and get regular reports. How much better than the parents who are now forced to stick their kids' pictures to bulletin boards, hoping to get word. But still I cried a little last night after Frankie told me on the telephone, "Night-night. I love you!" Today we finally got to talk to Annika's regular doctors. They are going to do an endoscopy tomorrow, with probable plans to treat any bleeding varices that they find. We had still been hoping, in our own way of denial, that perhaps all the bleeding from her bottom had been a case of some massive hemorrhoids, but Dr. Alonso cocked her eyebrow a bit and said that it was most likely a gushing varix (swollen blood vessel) that was bleeding so quickly that it was passing immediately through her system before it had time to clot. She told us that she is anticipating that Annika will be having a surgery called a Rex Shunt. If you read through the article linked (which, by the way, is from the hospital where Annika is currently inpatient), you will discover that it has an amazingly high success rate. But that success rate, you will note, is cited for children "with no other underlying causes for portal vein clotting." Unfortunately, Annika does not fall into that group. This surgery has been done on only two other children here after living donor liver transplants. The first child came through with flying colors. Problem solved. The Rex Shunt failed for the second child, the lovely and sweet Jayli, who then needed another transplant and subsequently died. Thus, the doctors have been putting off the Rex Shunt with Annika, despite knowing about her clotted portal vein. We have no idea how all this is going to turn out. So, yeah, I've got circles under my eyes. And I'm trying very hard not to throw up. I need to be optimistic for Annika's sake, and there is a part of my brain that is shouting, "Hey! This could be it! The answer to all Annika's problems. Let them go ahead and do it, already!" But you can probably guess what the larger part of my brain is saying, and it only has to whisper for me to hear it.

19 Comments:

Blogger Yankee T said...

Oh, Moreena, I cannot imagine your horror. Another blogger dubbed me "Bloggy Queen of Generous Optimism" and I sit on my throne (no pun intended) and send my optimistic thoughts your way. Please take care of yourself; Annika is in great hands and you need the support. You're in my heart.

9/06/2005 3:04 PM  
Blogger Phantom Scribbler said...

Oh, Moreena. Our hearts are in our throats for you and Annika and Joerg and Frankie. We'll be sending you every optimistic thought and prayer we can!

9/06/2005 3:22 PM  
Anonymous Anonymous said...

There is nothing to make you so vulnerable than caring for your daughter bedside at the hospital.
Sending lots of prayers and good thoughts your way- stay strong.

suzanne, www.specialneedsmom.com

9/06/2005 3:49 PM  
Anonymous Becca - momofnataliebear said...

I don't know what to say. I don't have any answers. We'll be there Thursday for clinic too, and I'd love to come and give you a HUGE hug!

9/06/2005 3:56 PM  
Blogger Sarah said...

I am so sorry to hear this. We will all say a prayer for Annika. I will check back often for updates. I too, can't wait to give you guys a big hug on Thursday. What is your room number?

9/06/2005 4:35 PM  
Blogger Moreena said...

We are in room 686, so you can call the main hospital number and ask for our room. Be prepared to talk to Annika, though, as she believes that she should get to talk to whoever calls!

9/06/2005 4:47 PM  
Blogger ocelot said...

Arg! Sadly, the world is big enough to hold all the sorrow requisite. Been away from blogs, but was given a heads up on your situation by Citrine. I'm sick to my stomach with worry for Annika, and you are in our thoughts and hearts. Big hugs from us! Hearts out to Frankie too!

9/06/2005 5:25 PM  
Blogger liz said...

I just got back from a long weekend away and only now have read what you're going through. I'm so sorry. I hope everything goes okay and that you all come through safe and sound.


You are all in my heart.

Hugs and kisses.

9/06/2005 7:46 PM  
Blogger Bettie Bookish said...

Moreena~

There's not much I can say here that everyone else hasn't already said. Prayers. Happy thoughts. Good wishes. Please know that we here in Florida are keeping all of you close to our thoughts all day long.

9/06/2005 9:42 PM  
Anonymous Anonymous said...

Just adding my continued prayers here with the rest. Know that there are many prayers going out for Anni. And for you, Frankie and Jorge.

(((Moreena)))

tina

9/07/2005 6:22 AM  
Anonymous Beanie Baby said...

I'll be keeping you in my thoughts and checking back often to see how things are going. I wish there was more I could do.

9/07/2005 7:36 AM  
Blogger Coralee said...

I have asked those I contact in Shelby's prayer group to pray for Annika and your family. You are in our constant thoughts and prayers.
Shelby's Grandma Cori

9/07/2005 8:15 AM  
Anonymous Anonymous said...

Many prayers, especially prayers to guide the docs. You are in good hands in chicago.
I am sorry you were hung up on. That was wrong.
Stay on top of things...even in your weariness.

Suemcg mom to moira

9/07/2005 10:12 AM  
Blogger Elle said...

Hi. Tina told me about your blog as my son's liver and kidneys failed this summer due to a viral infection. Miraculously he has recovered, and for now we are just monitoring him....constantly. I can never know what you are going through. I had a mere glimpse into that world and it was terrifying. I also have a younger son that we sent away for the summer. You are an amazing family. Stay strong, and please know that we will be praying for Annika. God Bless you.

9/07/2005 10:18 AM  
Blogger trisha said...

Oh, Moreena....sending you love and my prayers and anything else good I have.

Love you!

9/07/2005 8:37 PM  
Anonymous Sheryl from CLASS said...

Oh, Moreena, I'm sorry the decisions are getting more urgent and complicated for Anni. You are all in our prayers. Your mention of Jayli brought a tear to my eye. That little girl touched my heart, as does yours. It continues to amaze me how similar circumstances have bonded our CLASS families. Thinking of you often and praying for more everyday miracles.

9/08/2005 11:43 AM  
Blogger Running2Ks said...

Moreena, I am so terribly sorry. No parent should ever have to go through this worry and pain. I add my prayers for Anni and your family.

9/08/2005 8:20 PM  
Anonymous Anonymous said...

Oh, poor Moreena.
I'm so sorry.
(o)
Peripateticpolarbear
http://theiceflue.typepad.com

9/08/2005 8:46 PM  
Blogger Sarahlynn said...

Moreena. I am hugging you in my mind. This all took me by such surprise. Annika has been well as long as I've been reading you, and you always seem so upbeat and capable and positive, that it seemed to me that all the liver complications were in the past. I am so so sorry that they are not.

If there is anything I can do, please let me know. I am not far from your home and would be happy to help with Frankie (I'd love to have her here! I could sent you daily update videos with two blond almost-potty-trained 23-month-olds.) My dad works very near Anni's hospital, and is a professional at visiting people in hospitals. (He's the very coolest type of minister/pastoral counselor.) Please let me know if I - or he - can help.

You and Anni are very much in my prayers. And thoughts. And birthday wishes.

9/08/2005 9:35 PM  

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