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.

Saturday, March 18, 2006

the forecast: more of the same

Big news at the front end: Annika is back home. Pale-skinned and mudbrown smudges under her eyes, but home. Here's how this latest episode played out: She started bleeding Wednesday afternoon, and Jörg took her to the ER with the understanding that I would stay home, pack, and reassure Frankie. After I got her to bed, I would head to the ER to trade off with Jörg while our neighbor stayed with Frankie until Jörg could return home. However, when Annika heard that she was being transferred to Chicago, she requested that her Daddy accompany her instead of me. It took Jörg all of about 3 seconds to decide to cancel his classes so he could go with her. Hey, it was the last day before Spring Break, traditionally not an educationally effective day, anyway. Children's in Chicago sent their helicopter to pick her up from our local hospital and deposit her back into the PICU. At first I was a little taken aback by Chicago's reaction. I expected an ambulance to 6 West, not a helicopter to the PICU. After all, the bleed had only just started and, although it was bright red blood which is worse than the tarry black stuff, it was only a small amount compared to what we had seen before. Later that night, much later, it hit me. She's having a bleed while on her new medicine, propranolol. This medicine was started in an effort to lower the pressure in her portal system, which would, hopefully anyway, mean that she would not have any more bleeds. But the problem with propranolol, in addition to the fact that it hasn't really been shown to work this way in kids, is that it lowers the heart rate. When you're in the middle of an active bleed, you want your heart rate to go up in order to keep pumping enough blood to your vital organs. If there's less blood overall in your system (because of the bleeding), you need your heart to pump faster to make better use of the lowered volume. Since propranolol suppresses that natural reaction, a bleed could be more dangerous.* After 24 hours in the PICU, they were ready to move her upstairs to 6W, reassured that this bleed did not appear to be worsening. And then 24 hours after that, housekeepers had to be called to 6W to clean up the mess of Residents' jaws all over the floor, once Dr. Whitington announced that he was sending her home. Quite the surprise. So now we have a new plan. Evidently the propranolol is not stopping her from bleeding, and perhaps makes it more dangerous when she does have a bleed, so she's off that now. Her liver enzymes (which sometimes indicate liver damage) are still elevated. I had hoped the elevation was a temporary effect of her recent vaccinations, but the accepted theory now is that the propranolol may have caused reduced blood flow to her liver, resulting in damage. The reason that this is important is that the transplant surgeon has finally pinned down a date that he thinks would be the soonest he would consider retransplant for her: next November. So we need to be very careful that we don't do anything that might risk liver failure before that date. Just so we know what we might be looking at, Dr. Whitington explained to Jörg that Annika is likely to have something like 20 bleeds between now and the date the surgeons have set. In recognition of that fact, we have now agreed that we will no longer head straight to the ER at the first sign of a bleed. Some of those 20 bleeds might be minor ones, like this one turned out to be, so we'll wait until it's clear that the bleed is, in fact, a major one before we bring her in. I heard this bit of news with a weird mix of disbelief and relief. Relief that we don't have to run right to the ER before we even know if it's going to be bad; relief that we've been given hope that not every bleed is going to need intervention. But there's some incredulousness, too. I mean, of the 8 or so bleeds that Annika's had since September, this has been the first to end so quickly and not to require multiple transfusions. That's not the greatest track record. Still, her doctors are concerned about her quality of life - and certainly staying out of the hospital, if possible, is going to go a long way toward improving that. As long as the message is not something like, "Enjoy her life while you can because we're not too sure where this is going, but none of us are holding our breath." Neither of us is really sure what the doctors in Chicago think her prognosis is. It's a question that I'm not even sure they can answer with any certainty. Remember when I asked the surgeon about her needing another transplant? Back when she first started bleeding again after the shunt surgery? He told me that retransplant was on the horizon, but "only a teeny, tiny little speck on the horizon." I guess that means we're living life through a telephoto lens, given how that speck has zoomed in to full view in just a few short weeks. No wonder I'm having trouble getting the big picture. All of my information is coming secondhand, but I take it that the transplant meeting last Thursday found the doctors somewhat conflicted on the topic of Annika, with the medical doctors pushing for the necessity of a retransplant, and the surgical doctors saying that, nevertheless, another transplant would not be a good idea just yet. I guess "conflicted" is just not the word I want to come to mind when describing discussions concerning my daughter's future. At least the insurance disaster has been resolved for the time being, so that we don't have to worry about coverage for this latest stay. At least, I hope not. We are just ... tired. Tired of fighting, tired of bad news, tired of wondering what the doctors are really saying about Annika's chances during those Big Meetings. I guess I just wish she didn't look so sick.
* After writing this, Jörg and I had our own Big Meeting to discuss the questions we have for the docs when we return to Chicago for liver clinic this week. He tells me that no one seemed concerned about propranolol's effect on the bleeds, just its effect on her liver. OK. But why did no one mention this possibility before she started propranolol? We sure do hate the feeling, the constant feeling, like the game plan is being made up as we go along.


Blogger ccw said...

Glad you are back home.

I hope that you are able to get the answers that you need.

3/18/2006 7:38 PM  
Blogger Sarah said...

Glad to hear that this was a short stay. However, I can not imagine how you both feel about pretty much getting the run around on Annika's medical care.

Annika is in my prayers every day.

3/18/2006 7:49 PM  
Anonymous Anonymous said...

HUGS. I hope you get answers to your questions. Try to get some rest and enjoy having Anni home until them. Thinking of you as always.


3/18/2006 7:58 PM  
Anonymous Anonymous said...

You are all in my prayers. I'm glad that the doctors are actively working to minimize the time Annika has to be away from home. I can't imagine the frustration that must be a constant companion to the unanswered (unanswerable?) questions you continue to be faced with.

I'm glad Anni is home.


3/18/2006 8:03 PM  
Anonymous Jamie said...

I'm very glad Anni is back home, but I'm sorry you're facing down so much stuff. I hope they're wrong about the bleeds and you guys find a few minutes peace over the next months

3/18/2006 8:54 PM  
Blogger Rev Dr Mom said...

Glad Annika's stay in the hospital was brief. You all remain in my prayers; I can't imagine how trying this must be for you. Take care.

3/18/2006 8:55 PM  
Blogger susan said...

I'm glad you're all back home together (and that the insurance got resolved, too) and hope all your quality of life goes up in the coming weeks--with so much uncertainty it must be hard to relax, but I wish you some calming and quiet times so that you and Jorg can figure out what your questions are and what answers/info you need to help Anni and Frankie deal with all the waiting.

And needless to say, I'm sending bleed-avoiding thoughts out into the ether on Anni's behalf.

3/18/2006 10:15 PM  
Blogger Phantom Scribbler said...

I'm so glad that you're home, but wishing that you had a better idea of what you are dealing with. Thinking of you, and adding my anti-bleeding thoughts to the ether.

3/18/2006 10:26 PM  
Anonymous Anonymous said...

Glad to hear you're home, but perplexed like you about what's going on.

Would a second opinion be an option?

We continue to pray.

Frank (Marisa's Dad)

3/18/2006 10:50 PM  
Anonymous jen said...

I'm glad your baby girl is home! I'm overly happy that you are an educated parent!! Last night I watched a med student pass out. I just found your blog the other day, but i'll definitely be following it. sounds like you all are at a wonderful medical center in chicago!

3/18/2006 11:07 PM  
Blogger liz said...

All my love and prayers to your whole family.

I'm glad you're all home. I wish you knew what the heck was going on.

3/18/2006 11:36 PM  
Blogger mc said...

What everyone else said. Thinking of you all...

3/19/2006 6:39 AM  
Anonymous Beanie Baby said...

I'm glad that Anni is back home, and I wish this was all more predictable.

Maybe I'll stop sending generic positive thoughts and start sending platelet thoughts instead?

3/19/2006 12:45 PM  
Anonymous Irene said...

I don't even know what to say. You guys are in my prayers. Hopefully Annika will start feeling better while she waits.

3/19/2006 7:40 PM  
Anonymous Anonymous said...

Thinking of you, Moreena. I laughed out loud at the clean-up of the dropped jaws. You are so funny and crazy and totally sane, and such a great writer. Your blog really is a gift.

Love to Anni, and the rest of you.

xo Catherine

3/20/2006 7:12 AM  
Anonymous Anonymous said...

I wish I could take some of the worry off your shoulders--but all I can do is carry some of it along with you.

I'm happy Annika is back home, the very best place for her to get stronger.

Hugs and prayers,
Mary, Ayden's grandma

3/20/2006 7:34 AM  
Anonymous Becca - momofnataliebear said...

We sure do hate the feeling, the constant feeling, like the game plan is being made up as we go along.

I am right there with you, my friend. Right there...

I am so happy to hear that you are all home.

3/20/2006 8:56 AM  
Blogger Yankee T said...

Good god. I am on the positive thinking train full time. Do enjoy the home time. Love to you all.

3/20/2006 11:21 AM  
Blogger Rowan said...

I'm glad to hear that the bleeds are being evaluated on a one by one basis.

Hopefully, ALL of your quality of life will improve greatly.

I have a question, though. With the transplant scheduled for so late in the year, will you end up with a similar maxed out situation with the insurance company?

I certainly hope not.

Are you guys looking into even more ins. coverage to try to avoid this? Is there any way to even do so?

3/20/2006 4:52 PM  
Anonymous Anonymous said...

I, too, am sending positive thoughts your way. I think you are a very strong and brave mom. Anni and Frankie are very lucky to have you. I hope and pray for you with all of these challenges.
Shickshinny PA
(new reader--I really enjoy your blog)

3/20/2006 7:26 PM  
Anonymous Mary Lee said...

Nora was on propranolol for five years. No one was ever concerned about it having a negative effect on her bleeding. They only discussed holding a dose when/if her blood pressure was too low.
It definitely did not compromise her liver funtion.

When you said that you are getting your information secondhand, did you mean through your husband who was on guard this hospital stay?
If so, I can totally relate. Even though my husband has a science background and I do not, I must be in the driver's seat when it comes to Nora's medical life.

When we are in crisis mode, I always keep a suitcase packed in the car, I call it the power of negative thinking!

As always, Annika is in my prayers.

3/20/2006 9:26 PM  
Blogger Moreena said...

Rowan - it's a good question. I think the answer is that we're never, ever going to be certain about our insurance ever again. And, no, there's no way we could get extra coverage for her, outside of some sort of governmental program. We are actively looking into that option, though. Some states have extra coverage programs already in place, but Illinois has some funky requirements for some of their programs (like, for instance, that the child be without insurance for 3 months. OK, that's a bad idea...)

Frank - we've thought about it. It's tough, because we know that Annika's situation is a little weird, so the docs have to make it up as they go along. And the Chicago docs, at least, know her very well. But it's a thought.

Becca - I hear you.

Mary Lee - Yes, that's where we are confused. We can't really find anything about propranolol and it's effect on the liver, so we're definitely going to ask to have that better explained to us. And, yes, it's secondhand through Joerg, but I, too, prefer to be there to hear it all myself.

"The power of negative thinking" is a great line. We are some powerful people around here lately, let me tell you.

3/20/2006 11:32 PM  

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