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 26, 2005

0 for 3

We're back home again, and I am slowly emerging from my usual post-hospital funk to finally get an update written. Annika did not get her varices banded this time, but instead they were sclerosed. Essentially, they stuck a needle all around the varices in her esophagus (all 4, evidently the one that they banded last time had still not shrunk completely) and injected a chemical that irritates the tissue and causes the blood vessels to harden. It's a much more unpleasant procedure than banding, but, then, Friday was a crappy ass day all around. She was none too thrilled at the prospect of going downstairs from her hospital room to have them "look in her throat" (as we explained it) again. Her nurse for the day, Donna, and I did our best to reassure her. First, we told her that after the procedure she would be able to eat (she hadn't eaten or drunk anything since the night before). Donna made a big show of writing down her requests for food on a piece of paper so that it would be all ready for her. Then she got very nervous as we approached the holding area downstairs. "Look, Anni," I reassured her, "you already have an I.V. so they won't be giving you the mask this time." That was another welcome bit of news, as she fears going under with a mask almost as much as she hates nasogastric tubes. While waiting she said, "Mama, please tell them not to hurt me, OK?" And I quickly came back with, "Of course not. It's not going to hurt you. Remember last time? You just woke up and you had a funny feeling in your throat, but it didn't hurt, right?" "Right." But this time some on-the-ball anesthesiologist noticed that she had a sensitivity to latex listed as one of her precautions, and lo-and-behold the packaging of the banding material has an alert for possible latex (Possible? Not sure what that means. Isn't it either in there or not? Maybe the workers might have been wearing latex gloves? Who knows?) So they changed strategy and went with sclerosing instead. When Annika woke up from the anesthesia, she was in a rage. Her oxygen levels kept dropping to 80%, and so the recovery nurses kept trying to put an oxygen mask on her. Needless to say, this was ratcheting up the rage levels several notches (Remember my assurance "no mask"?). Her main GI doctor finally pointed out that she might be in quite a bit of pain, and suggested giving her some I.V. pain medicine (Remember my assurance "it won't hurt"?). The pain medicine helped immensely, and I finally convinced her that her My Little Pony was the one who needed the mask, and, by placing the pony right by her face, she was at least able to get the benefit of blow-by oxygen. When we finally got back upstairs to her room, Annika began asking about her promised post-procedure feast. Which was when Donna found out that the "no food or drink" edict was still in effect for 4 hours after the procedure, and then she could move only to clear liquids (water, in effect, since Annika has no use for broth, popsicles, or jello). Finally 4 hours later she could move to a soft diet. Which meant that all her requested foods were off the table until the following day, at least. Yup, I was 0 for 3. And don't think she didn't take note. Let's just say I was not the most popular person in the room for the next few hours. And the news just kept getting better. Dave, our transplant coordinator, stopped by to tell us that the sclerosing would need to be repeated at least one more time. Annika, irritated with a burning throat, was not happy to hear this. Of course, she also knows how to seize the moment. She tugged at my arm, "Mama, I think I am going to need a furby for that." Aaarrrrrggggghhhhhh. I am going to have to put my foot down to stop the onslaught of creepy animatronic playthings into our lives. It all started with this puppy, the original "freak your real-life cat out" friend. Then we moved on to this bear, and now we have Good Morning Sunshine Pony to add to the battery-powered armada of overwhelming cutesiness. Really, the conversations that Annika makes up with her toys are so much more interesting when they don't have a set of pre-programmed phrases to contribute. One recent conversation between two dolls, with Annika providing both sides of the exchange: "OK, it's time to go to the beautiful, magical, fantastic ball now." "No, you have to go to the far-away hospital because you are sick right now." "No. I am not sick. I am putting on my beautiful, magical, fantastic dress and I am going to the ball right now." "No. I am sorry, but you have to go to the far-away hospital. They are going to get a piece of liver out of your throat. Then, you can go to the beautiful, magical, fantastic ball." "OK, I will go. But I am really angry about this." It took me a few moments to realize that she was talking about her recent transjugular liver biopsy, in which they insert a needle into her jugular on the side of her neck and thread it down to her liver, where they take a sample for examination. So it's clear to me that one of the ways that Annika works through her feelings about all this is through pretend play, and it's best just to let her imagination go where it needs to go, rather than guiding it with a giggling and blinking and mainly saccharine toy. On the other hand, I also have the general feeling that she should just to get choose whatever she damn well pleases because this is a lot of crap for a little girl to go through. There was one super-wonderful bright spot during our stay: Ralph came to sing! Of course as luck would have it, Annika was in the mood I like to call "grumptastic," rather than the perhaps more accurate but completely understandable, "cranky as all hell." I think the anesthesia was still leaving her a bit groggy, and her throat was hurting. While waiting in her favorite playroom for Ralph to arrive, Annika fell asleep on my chest listening to me read aloud "Alice in Wonderland." Perfect for those drug-addled days in the hospital, I know. Sitting there with my feet up on the modern fainting couch that we love, with Anni snuggled under my arm and her head resting on my breasts, I could remember all too vividly those long days and nights spent with her tiny baby head resting right there on my breasts, now finally empty after years of use. I remembered that, despite all the drama of those days, at least I could always comfort her so easily just by nursing. And I just don't know what to offer her these days. It's so easy to work yourself into a funk in the hospital. Perhaps that's why they've worked so hard to include lots of windows for sunlight and lots of bright colors and the cleanest, most wonderful fish tanks you've ever seen all over the hospital. Last time we were admitted I was offered a relaxation massage no less than 3 times. So I guess they're fairly aware of the dangers of hospital depression, not just for the patients, but also the parents. I had talked to Dave, our transplant coordinator, the previous day. I told him that I was just a little freaked out by the fact that our surgeon clearly is not too happy about performing this surgery on Anni, even in the face of bleeding varices, which will, in all likelihood, kill her if not fixed (and fixed by something other than sclerosing, which is only a short-term solution, and one with its own undesirable side-effects, at that). I also said that I was trying to keep my balance by remembering that Dr. Superina is not exactly an upbeat guy even in the best of circumstances. I think I've seen him smile maybe once, and that was outside the confines of the hospital. So I know better than to expect enthusiasm from him, but still... I asked Dave if Dr. Superina had performed the Rex shunt in any other transplant patients besides the two I already knew about. No, he hadn't (and this is significant, because Dr. Superina is the acknowledged expert on this surgery in this country). And it turns out that the one successful shunt that he performed was actually on a patient who had received a whole liver, rather than a partial liver like Anni (and like his other patient little Jayli, whose shunt failed). This is important because sometimes, with a partial liver, there just isn't a place on the liver to hook up the shunt. With this conversation replaying in my head, and Annika resting on me peacefully as she hasn't done much since her baby days, I got a bit maudlin. Jörg and I are having the opposite reaction right now to the prospect of this surgery. Jörg, like a man with a gun pointed to his head, just wants to schedule it and get it done. I, on the other hand, am happy putting it off as long as possible. I keep thinking of things I don't want her to miss, that she might miss if this surgery is unsuccessful. Annika loves Halloween best of all holidays, and so we really should try to wait until after then. And, of course, we don't want to schedule it over Thanksgiving, because it can be hard to get things done with everyone off on vacation. And then, of course, Christmas is a great holiday. Annika loves decorating the tree, not to mention the stocking and the presents. Then we really should wait for the first really big snowstorm because Annika is a sledding fiend, and we found the greatest hill in town last winter. And then I remember how Catherine Newman wrote about how sad she was at the thought of her son starting kindergarten and getting his adult teeth in her journal, and I think to myself that it would be the most wonderful sight in the world to see Annika with a mouth full of teeth too big for her little face. And so on, and so on... Completely and totally unrealistic of me, I know. But then Ralph came in, toting his guitar. I roused Annika, who clung to my neck. I explained that she wasn't feeling great because "they had had to do some mean things to her yesterday" (at which point, I mentally slapped my forehead, "DOH! Don't say it like that! That's not the way to talk about it to her! Think, woman, think!" But you try figuring out how to talk about painful stuff being done to make you better, and see if you can figure out how to make it all make sense to a 4-year-old.) He started off with one of her favorites, and then asked for her requests, which she was too sleepy and grumptastic to say herself, but I knew which songs she loved the best, even if my mind was pulling a blank on the actual titles. Luckily, Ralph didn't mind if I just sputtered out a few "close enough" titles. When I offered up two and asked her which was her favorite, Ralph interjected, "How about both of them?" Annika shivered in delight. If we were making a movie of her life, she would have held out her arms at this point and sighed, "Ah, Ralph. You had me at 'both'!" At one point I started singing along, but Annika put her hand over my mouth, "Shhh. I'm listening to Ralph!" After the concert, Annika went into a panic because she had left Good Morning Sunshine Pony upstairs, and she just had to show her to Ralph. I sprinted up the stairs, and returned just in time for Annika to make her introductions. Ralph bantered cheerfully with the thing, practically falling to the floor in mock surprise when Annika "woke" the Pony up to do its talking/moving thing. As we were leaving the family room, I saw Annika clutch her throat again. Concerned that she was still in pain I asked her, "How are you feeling, Anni?" "Mama, I am feeling really happy!" she replied. Thanks, Ralph. You're better than a breast full of milk any day! As we were returning upstairs, I realized that I had completely forgotten to take a picture of Annika with Ralph. So we grabbed the elevator, pressed the button for the lobby, and then made a run for it. Annika was hilarious, shouting, "Wait, Ralph! Wait!" and running in her adorably awkward gait. We managed to catch him just as he was headed out the door*, and snapped two quick pictures. *We had caught up to Ralph and the Family Life manager by the elevators earlier and he joked, "Well! Look who's following me!" To which I replied, "Yes, she's working on her stalker skills." To which I received uncomfortable looks all around. When, oh when, will I realize that my sense of humor is not always actually that humorous? On the way back upstairs, Annika swished her skirt in cheerful satisfaction and asked, "When will Ralph come visit me again?" I tried to explain that this was a special visit, and we might not see Ralph for a while as he was very busy going to visit kids all over the country. "OK," she said, "But next time I want to give him a chocolate cake!" Annika's plan to lure Ralph back (movie) Our next round of sclerosing is scheduled for October 13-15, her birthday weekend. Jörg has noted that Bruce Springsteen is in town giving a concert on the 13th. Hmmmmmmmmm.

15 Comments:

Anonymous Candace said...

I'm so sorry the hospital visit was awful, and has to be repeated, and that a terrifying surgery is looming ahead. I think you do an amazing job of parenting in the face of all of this. I don't comment a lot because I don't know what to say, but your family is in my thoughts every day.

9/26/2005 12:41 PM  
Blogger liz said...

Oh, Moreena, I'm sorry that the procedure was so sucky. And sorrier that she has to go back. And even sorrier about the need for a shunt.

But so happy that she was able to enjoy Ralph's visit.

Still thinking of you everyday.

9/26/2005 1:09 PM  
Anonymous Beanie Baby said...

Moreena, I'm so sorry that this didn't turn out the way you had hoped. It must be so hard and disappointing--and poor Anni, too, who has to go through all of this again on her birthday weekend.

I'll keep all of you in my thoughts and keep on checking a thousand times a day for an update.

9/26/2005 1:10 PM  
Anonymous Anonymous said...

Awww what a precious girl! The outfit, the crown, the plan to lure Ralph back! I LOVE IT! It just amazes me in spite of all that she has gone through - her little spirit. I loved the movie - I love seeing Anni.

Moreena - I'm sorry the hospital visit didn't go as you hoped and I'm sorry that you guys are facing the surgery. I cannot imagine how you must be feeling. Try to hang in there - I think you are doing a magnificent job! I also think you deserve Bruce Springsteen!!

You are all in my thoughts and prayers and I was so happy to see an update!

tina

9/26/2005 1:33 PM  
Anonymous Becca - momofnataliebear said...

Moreena-
I'm sitting here wanting to do something...but what. I've been there, well, you know that.

I read your last post, understanding and reliving every word, yet for the life of me I can't figure out what to do to make it better. I mean we've lived the last 6 months at CMH, you'd think that I could think of something, anything to make it all better.

Ah-ha...I think I have it...off to do secret work that will make Annika happy...

9/26/2005 3:19 PM  
Blogger Sarah said...

So glad to hear an update, I was getting worried. Don't feel too bad about the 0 for 3 thing. You weren't lying to her, you can't always predict what's going to happen, things don't go the way they are supposed to go. Annika is always in our toughts and prayers.

9/26/2005 4:48 PM  
Blogger Phantom Scribbler said...

Oh, Moreena. I wish I wish I wish there was something we could do besides listen. We are thinking of you all every day.

The photo is beautiful. And *I* thought the stalker joke was funny, even if no one else did. Or maybe I was still giggling over the "You're better than a breast full of milk any day!" line...

9/26/2005 4:53 PM  
Anonymous peripateticpolarbear said...

Oh, Moreena....
I'm holding you all in my heart.
Thanks for the great story about Ralph.

9/26/2005 6:23 PM  
Blogger Running2Ks said...

Moreena,

I am so sorry that things didn't go as planned at the hospital. I know that Anni knows it isn't your doing.

Can they do the banding latex free?

That stuff about Ralph was heartwarming and hilarious. That movie--sweet.

Anni is precious, and she has to endure so much. I understand why you want to delay some of the procedures.

Hugs to you. Your family is in my prayers.

9/27/2005 9:31 AM  
Blogger Elle said...

She will still trust you, even if you were 0 for 3. I remember telling my son that if he didn't eat on his own they would have to use a n.g.tube. The kid ate, and they used one anyway. I felt awful. I'm sorry you had a rough time. I'm glad Annika saw Ralph. Thank God for people like him, and you.

Hang in there, you are all in my thoughts and prayers.

9/27/2005 10:55 AM  
Blogger Yankee T said...

Moreena, so sorry that it was such a rotten ordeal for both of you. She is so brave and strong-she gets it from you! You are on my mind, and I am sending loving thoughts your way. How's Frankie holding up?

9/27/2005 5:19 PM  
Anonymous Rowan said...

I get your sense of humor. And I appreciate it. My unfunny comedian comes out everytime we step foot in the hospital. I think Kajsa's nephrologist thinks I'm insane (harmless, but insane). I'm so sorry that things totally sucked for you guys.
I don't know what to say about the surgery. Reading your thoughts on all the holidays and milestones got me all weepy again. I send you bits of my stength every day to help you get through this...to help you all get through this.

9/27/2005 7:31 PM  
Anonymous Marisa said...

Tell Anni, Marisa HATES the mask too and it's ok! HUGS to Anni and Mom!

9/27/2005 10:05 PM  
Blogger Jodie said...

I'm sorry this was so awful. I've added you to my prayer list.

Have you considered hypnosis to help in accepting the oxygen mask? I'm an RN and a hypnotherapist, and pre-surgery or pre-procedural hypnotherapy works really well for children. It doesn't take long, and the hypnosis can be done with your child on your lap.

It's a thought anyway. :)

PS -- my sense of humor must be similar to yours, I think -- I thought the stalker comment was hilarious!

9/28/2005 10:54 AM  
Blogger Rory Kearn said...

My thoughts are with you and your family. I know I used to get tired of people telling me that I'm so strong....that it's amazing that I am getting through my life. But really....you are amazing. And I hope it's OK that I let you know that. I'll send good thoughts your way.

Rory

9/28/2005 1:44 PM  

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