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, September 12, 2005

the nitty-gritty

There have been a few questions asked by several people, either over the phone or in the comments section, and so here are some answers: Wasn't this awfully sudden/unexpected? Yes and no. I guess the real surprise for Annika's doctors has been how well she has been doing for the past 18 months. When Annika was hospitalized in January 2004 for suspected PTLD and the clot in her portal vein was first diagnosed, the doctors were fairly sure that she would need some sort of surgical intervention, either the shunt surgery or retransplant, within the year. Instead, she appeared to improved with every passing month. When I asked Dr. Alonso to hazard a guess as to how long we would be able to continue along this way after last January's endoscopy, she told me that she had no real idea because she was still very surprised at how well Anni was doing. But, given that she only found one small varix in her esophagus during that scope, she guessed that we might have 5-6 years. Obviously, it's only been a little over 7 months since then, and suddenly Annika has four huge (grade 4, on a scale from 1-4, with 4 being the worst) varices in her esophagus. Not good. Still, Dr. Alonso was not really surprised. I take it that this was more the result she was expecting when this all started 18 months ago. The funny thing about liver problems in kids is that it is rather unpredictable. Well, not funny, exactly. It's one of the hardest aspects of life for the liver parents. When times are bad, well, they're crap. But even when times are good, there's always the fear that the crap is just around the corner. It's hard to get comfortable, mentally speaking. And you end up feeling like the crazy person that no one wants to talk to because you can't just smile and accept the sunshine of relative good health without worrying about the next storm that may or may not appear any damn minute. Annika's good buddy, Shelby, has been recently taken off the transplant list. Which is great, great news. But in some ways that makes the situation more complicated for her parents, because people are constantly congratulating them on their good fortune. But the thing is, Shelby still has a diseased liver, and they know that she is still very likely to need a transplant in the future. Sometime. Just hanging out there over their heads. So, sure there's gratitude and feelings of good fortune, but I imagine it's all tinged with a sort of uncertainty. After all, her mom and dad know how quickly fortunes can change in the world of kids' liver disease. So, yeah, it was certainly sudden. And it was also somewhat unexpected. But not completely. As Shelby's wise mom, Jennifer, pointed out to me when I told her that I was just not prepared for Annika to bleed like that, "Of course you were not prepared for something like this. You can't walk around expecting this stuff all the time if you are to stay sane." If the bandings are successful, is there a possibilty that she might not need surgery -- or that it might be able to be postponed for a time? This was a question from Rowan in the comments, and it is a good one. The bandings are just a temporizing measure. They fix the vessels that are currently at risk of bleeding, but they do nothing to address the underlying problem, which is increased pressure as the blood tries to flow through the portal vein to the liver, but is blocked by the clot. The body is capable of growing new blood vessels from the site of the blockage to the liver, and Annika has already grown some of those new blood vessels, called "collaterals". However, it appears that these collaterals are not growing fast enough to reduce the pressure. Not surprising, given that the portal vein supplies 80% of the blood to the liver (more on the anatomy of the liver). Something has to be done to address the underlying problem, or new varices will just keep cropping up, and she will continually be at risk for upper GI bleeds. The mortality rate for upper GI bleeds like the one Annika had in Dallas from an esophageal varix is around 6-10%, so they are a serious problem. Since the clot is outside of the liver, it is hoped that a shunt can successfully restore blood flow. The shunt, likely made from a piece of her own jugular vein, will reroute blood from before the clot back into the liver. A circulatory detour, essentially. If the clot had grown or moved inside the liver, our only option would be to retransplant, which is why the news from the CTA (last post) was such good news. It all sounds quite straightforward. "Shunt" doesn't sound like such a scary word, after all. But in my head I can't get past the thought that this is not a surgery that our surgeon is really confident will work in Annika. If he had been confident, then he would have done it 18 months ago when the clot was discovered, rather than waiting until Annika had a bleed, giving him the sign that the surgery could be postponed no longer. The real kicker in all this is that if we do the shunt, and it fails, then Annika will need to be retransplanted after all, and could very well be in much worse shape after the attempted shunt than she is right now. So, no, surgery looks unavoidable at this point. The postponing has already been done. We just wish it could have been a bit longer.
~~~~~~~~~~~~~~~~~~~~
Meanwhile we are trying to enjoy our time here at home. The constant fear that she will have another bleed is still with us, but laundry and other everyday tasks are successfully redirecting our attention away from picking that particular scab of worry. We did finally break down and buy a cell phone so that a call to "911" will always be immediately available. And then there is Annika, still mourning Aunt Pat, in her heartbreaking and confused 4-year-old way. Today she asked if maybe on our next trip to Texas ("After one sleep?" she asked) she might be able to do some tricks for Aunt Pat to make her live again, as if dying was just a state of serious depression that she could cheer her out of. My best explanation that death just wasn't like being sick or sad just led to more tears as Anni cried that she really wanted to hear Aunt Pat sing to her. From the back seat I heard her chanting softly, "Please come back to me, Aunt Pat. Come on! You can do it. I know you can. Come back to me. Please. Please. Please." After some silence, she tried another tack. "I have a great idea. How about if I make Aunt Pat some 'No More Dying Soup'?" It's hard to figure out where her little head is at. She knows Aunt Pat only through stories that have been told to her, through pictures, and through talking to Cliff and my mom. Still, she is feeling her absence in a profound and lasting way. And Frankie is struggling with her own Big Issues. She came back home her usual happy and well-adjusted self, showing off the new potty skills she picked up at my sister's house. I could hear the influence of my sister's family in her speech ("Thanks!" she says now, rather than her former "Dink Doo!"), and in her occasional frustration when she asked for something she had come to expect at Monica's house (Gum? I think that's what she was after.) I could tell that she had enjoyed her time at my sister's - Sunday night she wouldn't go to sleep until she had talked to Rayna and Monica on the phone - 3 times. She told Monica, very clearly, "I love you!" and then toddled happily off to bed. But she certainly needs me to hold her much more than before. And sleep no longer comes so easily to her. She refused her nap altogether today, and only fell asleep Sunday when I held her. Tonight she insisted on sleeping with Annika. Anni loved the idea, too. So Jörg got out the wrench, disassembled the crib, and moved it into Annika's room. Not good enough. They fell asleep tonight snuggled together in Anni's bed. I fear that this is going to result in less sleep hours for the two of them. But they are so happy together...it's worth it. We are going to try to let Annika have some fun for these remaining 10 days before we head back to Chicago, to live a normal 4-year-old life. But we did decide not to let her go to her preschool, although she would dearly love to be back with all her friends. For one thing, Dr. Alonso wasn't too taken with the idea of sending her off to school, in case she has a bleed while she's there. And then it also occurred to us that Annika has a history of dropping her platelets quite a bit with any viral infection (i.e., your usual cold). Since platelets are responsible for helping blood to clot, it seems that picking up a little something from her friends might lead to another bleed, or make a future bleed worse. Plus, we want to send her into surgery as healthy as possible. So, normal life...except I've been making a list of the most deserted parks here in town for our mid-morning play time. Good thing she has a sister to play with. So that's the word from our house, as reported by a Nervous Mudder (Annika's latest term for me). It's so wonderful to be home, but it's not the "relax and settle-in" kind of wonderful. It's the "isn't it great we have a moment to prepare ourselves for the storm ahead" kind of wonderful. If you're the praying kind, and find yourself frustrated by my onslaught of medical terms, here are the two main points: Annika needs 1) to last the 10 days until the next opportunity for banding without another bleed, and 2) Dr. Superina's skill to successfully shunt around the blockage, in order to avoid another transplant.

20 Comments:

Blogger Coralee said...

Oh, Moorena....how eloquently you explained the constant "state" of liver parents (and grands too). Yesterday at Shelby's Papa's birthday dinner, Shelby was being her stubborn self about eating "healthy" foods. Mom and Dad hung in there with her and had to keep me in check cause I just wanted to say, "hey, she's got a liver disease, give her a break" and then give her Pringles or whatever she wanted. Shelby's attempts at tears got to me and I wanted to do whatever would make her smile. BUT I know Shelby and Annika and all the children with illnesses need to be as normal as possible and I am awed at how in the midst of all the turmoil (actual and potential) you all keep going forward. Thanks for sharing. I'm praying for you all and that includes Dr. S., too!!

9/12/2005 9:46 PM  
Blogger liz said...

You are all in my thoughts all the time.

Hugs and kisses to you and your family.

9/12/2005 10:28 PM  
Blogger candace said...

Moreena, if and when you need to come back to Chicago, please call on me if you need ANYTHING. We are 28 miles from downtown. I really wanted to get down to meet you in person while you were here, but I was not able to with the kids in school and all. Please know you are in our thoughts and prayers. All of you.

9/12/2005 11:27 PM  
Blogger Sarahlynn said...

Thank you for the tutorial; that was very helpful. I was confused about what the shunt was to be shunting but now I have a good picture. I assume it's impossible or too risky to remove the clot itself?

I wish I knew what to say.
I wish that there was something to say.

But as the mom of a "heart kid," *this* I understand:
"It's one of the hardest aspects of life for the liver parents. When times are bad, well, they're crap. But even when times are good, there's always the fear that the crap is just around the corner."

Oh, yes. Ellie's so tired this week. It's probably just from the big weekend. But maybe, but maybe, but maybe . . . it could always be the heart. Even if I don't talk about it much. Even if I always paint a rosy picture when I do. I know why I'm still clenching my teeth at night.

9/13/2005 12:15 AM  
Anonymous Anonymous said...

Thanks so much for explaining - makes much better sense now!

I AM a praying type and I will keep these requests in my prayers.

tina

9/13/2005 6:40 AM  
Anonymous Beanie Baby said...

Thank you for the very detailed explanations. I no longer feel quite so ignorant.

I am still keeping you and your family in my thoughts. If you don't mind, I'll light a candle for the shunt (surgery?) in ten days.

9/13/2005 7:36 AM  
Anonymous Jenn said...

Moreena,

Did I really say something that wise? I impressed myself! Even though I'm a "liver" parent, too, your writings help make all this "medical" crap much easier for me to understand. I *know* of the impending cloud hanging over your head. Our cloud is much smaller, but I still know that feeling in your gut. I'm here - WHENEVER. Both Scott and I are so, so happy you guys bought a cell phone! That is a relief to us! Call me when you have some "free" time and we'll discuss how we can help out when you have to check into Chicago's Club "Med" next time. Take care :-)

9/13/2005 8:11 AM  
Blogger Phantom Scribbler said...

Thank you for spelling it all out for us, Moreena. I imagine that was not easy to sit down and write, nor easy to read over. We are thinking of you constantly here.

Annika's bargaining with Aunt Pat brought tears to my eyes.

9/13/2005 8:19 AM  
Blogger Hanuman1960 said...

You'll be in my thoughts and prayers.

Blessed Be....

9/13/2005 2:21 PM  
Anonymous Sheryl said...

Moreena, for some reason, reading your post today, all I could think is, thank God Anni has YOU for her mom. And it also made me miss CLASS a bit more, the disconnect is still odd.

Praying for happy, healthy days until Chicago and guidance for Anni's great team of docs and nurses.

9/13/2005 2:21 PM  
Blogger Elle said...

I will pray for those things. When my son was in the hospital I used to ask the doctor what the next thing to pray for was. What number had to go down, or what result of what test was needed. It made it bearable. Your family is beautiful. God Bless you all.

9/13/2005 4:20 PM  
Blogger Amanda M said...

Hugs!! Praying for 10 normal-enough days.

- Amanda

9/13/2005 5:45 PM  
Anonymous Marisa said...

Moreena, I take it she is not forming collateral veins then? Is that possible with the sort of clot she has? There is a 9 yr old here transplant at age 2 and she has slowly formed collateral veins so thye are thinking and still hoping no surgery for her. If they did surgery it would be in Chicago because they don't do that surgery here.
I am thinking of you all. Hugs to Anni!

9/13/2005 7:30 PM  
Anonymous Becca, Jason, & Natalie said...

We're praying so hard for Annika. She holds such a very dear place in our hearts - as do you. Please, please, please let us know what we can do. We will be back at CMH on Sept. 22, and we'll look for you.

9/13/2005 7:31 PM  
Blogger Moreena said...

Jenn - Now that you mention it, I'm thinking that actually Kristen, Havalah's mom, said that to me. My head is still all fuzzy. But you have said lots of wise things to me, you know.

Marisa - Yes, she has some collaterals, but they evidently aren't forming quickly enough or doing enough to relieve the pressure

Sarahlynn - Also, yes. I suppose I should say "parents of children with medical issues" rather than just "liver parents," but I don't know enough about other conditions to speak for them. I hear you.

Becca - We're being admitted the 22nd, so maybe we'll see you. I doubt we'll be there very early, though. Not exactly excited to check in, you know?

Coralee - You are a fantastic grandma.

Liz, Candace, Tina, BB, PS, Hanuman, Sheryl, Amanda, Elle - Thank you! All thoughts, prayers, and candles are appreciated. Surely they've all got to be more effective than my obsessive worrying!

9/13/2005 7:51 PM  
Blogger Sarah said...

We are saying prayers for Annika.

9/14/2005 8:36 AM  
Blogger Running2Ks said...

Moreena, my prayers are with you. I hope Anni can get through this. It is so heartbreaking to hear about her mourning. But so comforting, too, that you have 2 loving children who look to each other for that extra bit of support.

9/14/2005 10:03 AM  
Blogger Yankee T said...

Moreena, thanks for the education. You and your whole family are in my thoughts daily. And for whatever it's worth, Older Daughter signed up to be an organ donor, at the ripe old age of 17! Please keep us all posted. Positive thoughts going out to you and yours...

9/14/2005 1:46 PM  
Blogger Mike said...

I've been praying a lot more lately.

Which is funny, because I don't particularly believe in it, but luckily, it seems to help even if I don't believe in it.

It's at times like this I'm glad I majored in English instead of philosophy.

9/15/2005 3:35 PM  
Anonymous Rowan said...

Thank you for the information. I guess I asked a good question...I just wish that the answer had been a "good" one too. I will have Anni in my thoughts, prayers and all such things through Thursday and beyond.

I feel so much for you at this time. It is so hard to be the parent of a child with a chronic condition. It feels like I haven't let my breath out in years. Just remember to take some time to look out the window and breathe. Hold her dear and go outside and have fun together.

9/19/2005 10:00 PM  

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