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.

Sunday, January 29, 2006

prodigal blogger returns

I guess the vacation from the hospital turned into an internet vacation, too. But have you ever taken a vacation and thought to yourself, "I could live like this. Everyday. I really really could."? But then you start to wonder if maybe you would eventually take all that sun and sea and loveliness for granted, and find yourself vaguely dissatisfied once again. Just because that's exactly how perverse you have become in your need to whine, every single day. That the umbrella in your cocktail is annoyingly gauche. That the sand from the beach irritates the space between your toes. That the sun is unrelenting and is it really too much to ask for a little cloud cover every few days? And that the chocolate on your pillow every night makes so little sense because haven't you always already brushed your teeth before climbing into bed? Well, then, this is the post for you! So I meant to post some sort of update so many times, but it felt like some irritatingly yappy little poodle had taken up residence in my soul, and every time I sat down to write all that came out was so much yap, yap, yap. Shudder. For instance, when we were preparing to leave the hospital for the Kohl's house, all I could think of was the fact that there was some sort of screw-up with Annika's labs on Thursday. So the resident proposed that she have some of the labs done that morning and the rest (the time-sensitive ones) be done the following morning. And I was going to rail on about the fact that all these years post-transplant I have never had to ask Anni to be poked twice simply because I couldn't get my act together enough to get her to the lab on time, and here we were inpatient in a hospital with loads of people in blue jackets running around with blood draw supplies and the very lab to run the results in the basement just 6 floors below us, and somehow they can't work the schedule to avoid two sticks. But instead I just found our nurse and told her to beg whoever she had to in order to get a phlebotomist up to our room. Soon. And I made a back-up plan to steal a wheelchair and roll her on down to the lab myself to get the labs drawn all at once. All of them. Two sticks, my ass. Luckily for all parties involved, plan B did not have to go into effect. But, really, how silly is it to obsess over the number of needle pokes when the big picture is blinking right in front of me: LEAVING HOSPITAL! OFF TO KOHL'S HOUSE! PARTY! WOO HOO! And don't even get me going on the diplomatic intricacies and persistence involved in getting a lousy packet of Carnation Instant Breakfast (vanilla, please) to the girl who, in the past 6 weeks, lost 8 pounds (or nearly 20% of her body weight, and that's not counting the fluid weight she lost from her highest weight in the PICU). So we left the hospital and headed for the Kohl's House. We again borrowed the Gwyneth-Paltrow-Mega-Fancy Stroller to use for Annika, still without use of her legs. I had spent the morning hounding our poor nurse to get us discharged, even proposing she start paging (repeatedly) if the hold-up was lack of doctor's signatures on the discharge papers. But, of course, I still needed to get us moved in to the Kohl's House room, make sure we had groceries, and, very most importantly, fill the new prescriptions Annika was leaving on. The filling of the prescriptions can sometimes take some fancy footwork, and I needed all the time I could get to get the job done. What with the little poodle yapping away in my soul, and all. We got ourselves set up in the Kohl's House in record time, but Annika, unsurprisingly, had no interest whatsoever in accompanying me to Osco to pick up yet more pills to swallow. I bribed her with something or other, and we set off in the cold and biting wind. I wrapped Annika's bony little legs up in a blanket and wrapped a scarf around any skin left bare where hat and coat met, but she still shivered a bit on the way. We went to the new Osco, and I at least had the grace to be thankful that there was finally a pharmacy closer to the Kohl's House. But, of course, it took some 20 minutes of waiting and fruitless computer-searching and telephone transfers before the pharmacist could confirm that we were actually known to the company listed on our insurance card. At the end of those long 20 minutes, there was much regret expressed, but sadly the pharmacy didn't stock two of the three medicines and would Monday be soon enough? In blatant defiance of the "Please no cell phones" sign at the counter, I took my phone out and tracked down our long-suffering nurse from that morning to ask the resident to call in a prescription for just enough pills to carry us through the weekend from the hospital pharmacy, with which, unfortunately, our insurance company is not on speaking terms. And which was, also unfortunately, about to close for the weekend. About this time, Annika awoke from the little snooze she had been taking in the stroller. As was usual, she awoke crying and confused. Kneeling down beside her and hugging her, she clenched her legs and told me that she had to use the toilet. Now. I looked around for a sign and, seeing none, asked the pharmacist if there was a toilet she could use. "No, we don't have any for public use." Again, many regrets and all. I contemplated making a scene. Shouting at her impassive face, "Oh. OK. So she's made it through two transplants, repeated acute bleeds, a major shunt surgery which may well have not been successful given two subsequent post-op bleeds, 6 weeks in intensive care with an open abdominal wound, 1 month on a ventilator, for a lifetime total of 18 months or so in the hospital, 2 months of those with a machine breathing for her, but you think it's okey-dokey for her to JUST HOLD IT. Nice." Maybe making a scene like that would have made me feel better, but instead I just jogged back to the Kohl's House. On the way back I imagined the scene unfolding with my Big Speech (above). Then I imagined that it was my PICU buddy, Angela, in line behind me. Angela in real life would never roll her eyes at me, but she would have had every right. And then to follow it up with her own Big Speech, ending with a request for me to move it on and let her fill her own prescriptions. And then, because I can never stop once I get going, I imagined the pharmacist herself rolling her eyes at both of us and making her own Big Speech, because the world is oh so full of sadness. At this point you may be realizing why it's taken me so long to post, and perhaps even thinking that a few more days' time might have been well-advised, Little Miss Woe is Me Sadsack. Before leaving the hospital, I talked strategy with one of Anni's G.I.s, Dr. Emerick. She proposed scheduling the endoscopy to check out the state of Annika's esophageal varices for 11 days later, rather than during the next week. Her thinking was simply that Annika needed more of a break from the medical world than just a weekend would provide. If the scope showed more varices, despite the fact that her shunt appeared open on all the imaging, then we would be in for a serious excursion into the world of uncharted medical issues. "But," I had to ask, "if the scope shows no varices, would we be able to go home sooner if we went ahead and did it next week?" "Most likely. Yes." After that, there wasn't really much question. The Kohl's House is great and all, but it's not home. We scheduled it for the following Tuesday. I knew that if the news was bad, that I might regret not giving Annika one extra week to get back on her feet before pulling her right back into it all. But I was just that desperate to get back home, and I knew she was, too. Friday night, after all prescriptions had been secured, Jörg and Frankie and my mom arrived. The girls had a lovely reunion, with gentle pats on the head all around and much smiling. Saturday we had our long-awaited Christmas celebration. Michelle put up a tree in the upstairs lounge, and gave the girls some ornaments to decorate it themselves. We had to put a little chair beside the tree for Annika to do her share sitting down, since there was a more than halfway chance she would topple forward right on into the tree if left on her own feet. After lifting her arms to hang just a few ornaments, Annika was exhausted and we returned her to the sofa, where she supervised me finishing up the task. Her energy returned in enough time to open presents, albeit with perhaps a bit less gusto than in previous years. Still, it was an altogether satisfying afternoon. By Sunday it was time for me to get a bit depressed watching her attempt to stand, her legs quivering like a newborn colt's. With enough support under the armpits holding her up, she could move her legs in something that was close to walking, but with a stiff-legged gait that often resulted in crossed feet and collapses. And the crying. Oh, there was an awful lot of crying going on. And none from me, I'll have you know. Annika sobbed over every last little thing. Her milk was too cold. Or too warm. Her feet were too cold. Her socks felt funny. Her sister was touching her too much. Her sheet didn't feel right under her. It was too bright, or not bright enough, in the room. I suppose that I wanted to take her over to the Kohl's House and have the change of environment work magically to restore my old spunky Annika, with her fight and her humor and her general zestiness. Instead, I had something like a 5-year-old going through menopause on my hands. And it was all totally understandable. Jörg and I know better than anyone else all she has gone through, much of which I have reported here, but really not all, much as it may seem that way sometimes. If anyone deserves crying fits and hypersensitivity, it's her. But it just wasn't what I was hoping for, and I was starting to feel a bit bleary with it all myself. And then, of course, I was dreading the scope on Tuesday. Having had two acute bleeds from esophageal varices after an apparently successful distal splenorenal shunt surgery was just not very encouraging, even though she had not had a bleed in 3 weeks. "This will be our National Geographic Expedition scope," pronounced Dr. Emerick, emphasizing the whole uncharted territory nature of the procedure. Annika didn't protest heading back to the hospital early that morning, and she even requested that Dr. Emerick make a copy of the pictures of her throat for her. At least then she could see for herself what all the fuss was about. But then when they tried to give her the gas to put her to sleep back in the procedure room, she turned back into my old fireball, fighting and screaming. It broke my heart and gave me hope at the same time. Dr. Emerick came out to see me much more quickly than she ever had with any of the previous scopes, which should have been my tip-off, even if her huge smile of relief wasn't. "It looks just beautiful in there!" she exclaimed. "They're all gone, total decompression. Well, maybe one that you might call a Grade One, but nothing of what she had before. It's a sight to behold." And then she offered to remove Annika's staples while she was still asleep, and I remembered to let her know Annika's request that they also remove the tape covering her old JP drain site, as well, when she was under. And so that was it. Months of stress and worry and unexpected complications, and then they were just...gone. Later that afternoon I called around to give the news, and I was bursting with it, once it finally dawned on me that we could go home. That it was finally finished. By that time, the poodle in my soul was finally silenced and I probably could have written a very lovely and uplifting post, except for the fact that I was too busy packing and snuggling with my two girls who didn't want me out of a 6-inch radius at any point during the day or night.
So a few days later I called Angela to check up on how she and Brad and Lauren were doing, and to give her our news, as well. Talking to Angela again, I realized how surreal all this was. That just a few weeks ago we were waving at one another through glass doors, watching each other's kids laying in beds in rooms crammed with medical equipment. And now we were going home with Annika, and they had been forced to arrange their own burial plots already to make sure that the space in the earth surrounding Matthew would be reserved for them to share with him someday. It was all happening too fast for the general terms "happy" or "sad" to be large enough categories to capture the feelings. On the one hand, I felt like I should be overjoyed that we were going home far sooner than anyone had anticipated. But it's not as if The Joy just comes over you naturally after such a long time spent in The Land of The-Very-Opposite-of-Joy. And how could there be something like joy when Brad and Angela had just let go of their own Matthew just days ago? How could there be joy, knowing that Annika may have to keep going through shit like this, all her life? But we all know that there will be joy. That there will come a day when Annika is laughing more than crying. That my posts will once more be posts like those of millions of other moms, full of poop and snot and cuddles and cute stories that are destined to be mostly cute to me, because they are about my own kids, the most lovably entertaining beings on the planet. So here's to the end of the hospital saga. May its continuation be a long time coming.


Anonymous Crystal said...

WELCOME HOME!!! I am so happy for your family to be together again! It must be wonderful to be in your own beds! I have been keeping up on your posts for a few months now, and I am just overwhelmed with happiness right now! It is good to hear that everything is looking good for Annika. Thanks for the update, I have been wondering, and worrying! Good luck at home!

1/29/2006 8:56 PM  
Blogger Sarah said...

Wow Moreena. I am crying tears of joy for Annika!!!! This is just such wonderful news. Prayers for Annika to regain her strengh, for you to regain your sanity, and for all of you to remain one big happy family. Here's to more laughing than crying!

1/29/2006 9:03 PM  
Blogger Elle said...

Oh, thank God, Moreena!! I'm so glad Annika is better and that you are all going home!

1/29/2006 9:06 PM  
Blogger CLMama said...

Moreena! I have been checking your blog daily for an update; this is the most wonderful post to read. You are so eloquent; thank you for sharing. Many days of strength and recovery to Anni - looking forward to reading up on all that joy!

1/29/2006 9:08 PM  
Blogger candace said...

Truly an answered prayer! Welcome back! What a journey. I can't wait to read upcoming posts!

1/29/2006 9:14 PM  
Anonymous Sheryl, Justice's mom said...

Oh Moreena. Praise God you guys are home. And NO more varicies. I have goosebumps and tears everywhere! We will be praying for a stronger, healthier Anni in the days to come and that you are enjoying your reunion at home. Continued thoughts and prayers for little Matthew's family as well.

1/29/2006 9:17 PM  
Anonymous Anonymous said...

It's so good to hear such fantastic news! What a journey the lot of you have endured. I pray for increasing strength for Annika ... We are so glad she's doing so well!!!!! CONGRATS!!!!

1/29/2006 9:28 PM  
Anonymous Anonymous said...

Oh, I've been waiting for this post! I was getting so worried! I'm so happy for all of you, and I just know that Anni will thrive once again and work her way back to her old self when she's in her own space. Good luck, and thanks for sharing the news. You do everything with such grace, Moreena.

1/29/2006 9:29 PM  
Blogger liz said...

Welcome home! I'm so very, very glad that you are home.

I've never prayed so much for anyone in my life, and I'll keep praying -- for Annika to stay healthy, for you all to be together.

1/29/2006 9:31 PM  
Anonymous Anonymous said...

Moreena, that is fantastic news. I will look forward to years of boring posts about the color you paint the kids' bedside table. And of course, because it's you, there won't be a single boring word.

Love to you and your family.

xo Catherine

1/29/2006 9:35 PM  
Anonymous kristy and ashlee said...

WELCOME HOME!!! What a beautiful post! You have such a way with words! ENJOT your time at home, and we will pray Annika is back on her feet really soon!

1/29/2006 9:38 PM  
Blogger Phantom Scribbler said...

Oh, Moreena! I'm so happy for you and your family! So happy. Thank you for updating us.

1/29/2006 9:50 PM  
Anonymous Tammy & Janna said...

What GREAT news! I am so glad to hear that you are home and her shunt is working! Our prayers are with all of you that Annika continues to improve and you stay HOME!!

1/29/2006 10:15 PM  
Blogger purple_kangaroo said...

I'm so, so glad the varices are gone and that you are home.

1/30/2006 12:15 AM  
Blogger Sarahlynn said...


1/30/2006 1:16 AM  
Anonymous Beanie Baby said...

YAY MOREENA! Yay Annika! Yay Frankie and JOrg! How wonderful!

Of course, now I need your home address b/c I didn't get to the post office with my gifty. Can you email it to me?

1/30/2006 6:38 AM  
Anonymous Robyn, Emma's mom said...

So happy for you guys!

1/30/2006 7:05 AM  
Anonymous Anonymous said...

I am THRILLED to learn you are back home - FINALLY!!!! And so very, very thankful to hear that the varices look so much better. YAY!!! (Doing the happy dance here!)


1/30/2006 7:15 AM  
Anonymous Irene said...

YIPEEE!!!! Awesome news! just think in a few more months she will be out there planting flowers with you in the warm sunshine.(didn't she drown them on you,LOL)Prayers continue for you all!

1/30/2006 7:27 AM  
Anonymous Lisa (Aiden's mom) said...

I don't know what to say. I am just crying happy tears. I thank you so much for letting us walk this road with you.

OH PRAISE GOD ... no more varicies. No more.

The horror of what you have seen, I pray it be over. Love to you.

1/30/2006 7:40 AM  
Anonymous Becca, Jason and Natalie Ketter said...

Praise God...what a wonderful post, even with all the yappy :) dog parts!!!

I hate that long walk between Kohl's and Osco. Hate it. But I also hated that long walk in the halls of the 2nd floor.

But the odd thing is, and maybe I should write a post on this, is when I told Jason that you all would be celebrating Christmas with Michelle in Kohl's house, a part of us, tiny as it was, missed that place, the kitchen, the families, the understanding...

Big squeezy hugs from us for your girls.

1/30/2006 8:05 AM  
Anonymous Kim, mom to Sami and Kyle said...

Welcome Home - Home sweet Home that is! I am so, so, so glad to hear you escaped the Hospital and Annika is on the mend! I will keep her in my prayers for her continued and speedy recovery. I am looking forward to hearing about your fiesty little girl - back in action! Take care and take a deep breath and enjoy those girls!

1/30/2006 8:32 AM  
Blogger corndog said...

I'm doing the Happy Happy Joy Joy Dance knowing that you're home!

1/30/2006 8:47 AM  
Blogger halloweenlover said...

I crying with happiness in my office!

Oh hurray hurray hurray!

I hope the return to the hospital is NEVER coming and that Anni makes a full recovery faster than we could have dreamed. Welcome home!

1/30/2006 9:28 AM  
Blogger moxiemomma said...

what a relief to hear such good news from you! welcome home to all four of you!!

1/30/2006 9:30 AM  
Anonymous peripateticpolarbear said...

Happy, happy, happy dance!!!

1/30/2006 11:27 AM  
Blogger susan said...

Welcome back to your home, Moreena! I hope Anni's recovery continues apace.

1/30/2006 11:32 AM  
Blogger Rev Dr Mom said...

So happy for you all that you are back home again! And I hope that Anni regains her strength and is soon back to the lively girl you remember.

1/30/2006 4:28 PM  
Anonymous Anonymous said...

Well Moreena, we have certainly waited long enough for that entry. (But, I will never forget the chloral hydrate story.) I am so happy to hear the news! Also, as a side note; the next time you need someone in the lab harassed -I'm your girl. You know I love to crack the whip and bully the slackers! Looking forward to more joyful entries! -Genny

1/30/2006 4:32 PM  
Anonymous Hannah said...

I've met this 'poodle' as well - when my godchild was through his Kasai and finally after long days without pain, we all were strugglingmore than before. Mostly not with fear of the future, but just with exhaustion, I guess. (But led to frequent crying and a few tensions for a while...)
Hope you all find your way back to normality easily and that Anni can regain her appetite in food and life soon!

1/30/2006 4:42 PM  
Blogger Shelli said...

There are so many times when you could just yell and scream and swear at the unfairness of it all, but I think this is the only time since I have started reading that I have ever seen you use a swear word in a post. You are an amazing woman, Moreena. God bless you and continue to take care of Annika.

1/30/2006 5:34 PM  
Anonymous Sabrina said...

We are so glad you are home. We have been anxiously watching for lights, or some sign of inhabitance by you guys. We left a message, and hadn't heard back, so weren't sure. Call us when you get a chance.
Sabrina and Robin

1/30/2006 5:53 PM  
Blogger Yankee T said...

EXCELLENT NEWS!!!!! I have to admit to having been wrapped up in my own drama, and I am so glad to take a break from it to find that yours has lessened. Bless you, all of you, always.

1/30/2006 6:16 PM  
Blogger angela marie said...

So so happy that you are all going home again, home again, jiggity-jig.

I'm happy too, that you were able to celebrate Christmas in January, not February.

God Bless you all!

1/30/2006 6:51 PM  
Blogger Suzanne said...


I'm delurking to tell you how happy I am to hear your good news. Thank you so much for sharing it with all of us.

1/30/2006 7:35 PM  
Anonymous Anonymous said...

Home, home, home!!! What a beautiful word. Thanks for the wonderful news!

Mary, grandma to Ayden

1/30/2006 7:58 PM  
Anonymous Jeni said...

Oh, thank God! Yahooey!

1/30/2006 8:40 PM  
Anonymous Anonymous said...

How wonderful that your home at last! So pleased to hear that those horrible varacies are gone and good ridance. hope that christmas was o kay they always say better late than never. hoping everyone is happy to home and all together god bless all of you tabitha logans mom

1/30/2006 8:53 PM  
Anonymous Jamie said...

I'm so glad Anni is going home. What a blessing. Enjoy your time, Moreena. You all have deserved it.

Have you considered writing a book about this experience? If not, you should.

1/30/2006 9:56 PM  
Anonymous Rowan said...

Oh, this is so wonderful. I am absolutely thrilled for you. I know that it is hard to think about Mathew and his family. But I just hope that you can break yourself away enough to feel the great relief that must be welling up inside of you.
I'm looking forward to your tales of snot, poop, and food. (Maybe not in that order, though.)
Three cheers from the pep squad!

1/30/2006 11:17 PM  
Blogger Kathryn said...

So so glad. It was lovely to be able to tell all the people at church who have been praying for Anni that she is home safe. I know the next few weeks may be tricky, but she will get stronger every day, and the further behind her the nightmare time is, the less it will cast a shadow.
Don't try to be supermum...You must be so wiped out yourself after that ordeal. Lots and lots of love to all of you, and many blessings.xx

1/31/2006 4:19 AM  
Blogger Jay said...

I hope you all have the opportunity to enjoy it.

1/31/2006 4:51 AM  
Blogger Tree said...

Well I'm crying over here! How utterly wonderful.
I am so happy that you get to finally enjoy being together...AT HOME!

1/31/2006 7:05 AM  
Blogger Running2Ks said...

Absolutely wonderful--a welcome home and all of that. You are incredible--you all are.

I am thinking of you, daily. And I hope that recovery is swift and your bouncy Anni comes back at home again.

Hugs to you. Prayers for Matthew's family.

1/31/2006 8:21 AM  
Blogger DevilMacDawg said...

Oh happy day for you! How wonderful. Such great news!

1/31/2006 8:29 AM  

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