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.

Friday, December 30, 2005

balancing

Ah, the delicate parental torture of feeling torn between your two children. Obviously, of the two girls, Frankie's been dealt the easier hand. But that's not so obvious from the point of view of a two-year-old. And, really, we don't (and shouldn't) expect her to see it that way. As far as Frankie is concerned, her world has been turned upside down, and all the normality that has come to signify safety for her has disappeared. Mostly she is dealing with it extremely well, thanks to the loving ministrations of my mother, thankfully retired and able to devote so much time to caring for her at our own house, which at least maintains a familiar environment for her. But she finds her own way to let us know that she's having difficulties. She fights going to sleep, her limbs twitching with the electricity of sleep-deprivation. And, normally an adventurous and satisfyingly healthy eater, she seems to be conducting nutritional studies funded by Hidden Valley, investigating the effects of a diet consisting entirely of ranch dressing sucked off of McDonald's french fries. I've been spending my nights at the Kohl's House with her and my mom, but usually I shower, dress, and leave for the hospital before she awakes in the morning. This morning, though, I overslept. Frankie was delighted to find me still in bed when she got up, and I decided I would take advantage of this opportunity to finally remind her of her once healthy eating habits. I called Jörg to see how the night had gone, and to let him know I would be a bit longer. He asked me to be sure and turn on my cell phone, in case something came up, and I said, "Of course." To my delight, Frankie ate oatmeal, blueberries, and orange juice for breakfast, with a chaser of cold pizza. Finishing up and feeling like Super Mama, I called over to the hospital to get an update on Annika. Jörg answered the phone, sounding very stressed, "Where are you? Your cell phone isn't on!" Annika had become very upset during her respiratory treatment, which consists of a therapist pounding on her chest ("I prefer the term 'percussing'," explained one therapist) to try to loosen the secretions clogging her lungs. After the "percussing," the therapist needs to suction out her breathing tube, another activity Annika despises enough to rouse her out of her generally sedated state. Jörg hadn't noticed her distress at first because he had been outside of the room listening to the doctors' rounds on Annika (the daily report and strategy session for patient care), and by the time he had gotten in there, she was very upset. He had tried to call for my help, and not reached me, to his frustration. Sure enough, my cell phone was still off. I felt terrible. By the time I got over there, she was calm and looking very comfortable. But her fevers have returned, so the doctors have ordered another CT to check if there are any other fluid collections to harbor bacteria. They have also ordered a chest tap to relieve the fluid off her lungs, and to check the fluid collected for any sign of infection, which should yield a final decision on the pneumonia question. Moving a patient on a ventilator is never an easy task, so there will certainly be a lot of action around our little corner of the hospital trying to take Annika on all her field trips. Some answers would be nice, though. I plan on staying tonight until she is through with all her tests, which means I could have a very late night over here. So I decided to spend the day with Frankie, letting her have some fun at a nearby park with a playground. I checked that my cell phone was still on approximately every 2 minutes, so I'm pretty sure that the other parents thought I had some electronic form of obsessive-compulsive disorder. I even checked to make sure that the ring tone was on, and contemplated setting my profile to "outdoors," except I don't know enough about my new cell phone to really understand what that means, exactly. When we returned from our playground fun, Frankie inhaled a bowl of spaghetti and asked for more. So at least we're making progress with one child. Annika, we're all waiting patiently for you, too. Meanwhile, our PICU neighbor, Matthew was successfully extubated yesterday, much to everyone's delight. His white cells still aren't kicking in, though, so the joy was tempered. Well, more accurately, his white cells keep showing up, rising, and then disappearing again. Matthew's dad, Brad (an employee of LaSalle Bank), and Jörg joke that Matthew's white cells keep Banker's Hours. Our PICU suite has become quite the convivial place. Angela and Brad bought pizza for everyone last night and we all, nurses too, sat around in our little common nurse area, still watching our children through the glass walls of their rooms. Our rooms are in a rather private corner of the PICU, so it really does feel like the place belongs to us. I keep saying that they should have installed couches and a fireplace for the parents to relax by while waiting for signs of improvement, until Angela pointed out that the amount of oxygen flying around the two rooms probably ruled out an actual open flame. I said I'd settle for a skillfully painted simulation.
~~~~~~~~~~~~~~~~~~~~~~~~~
Just since I started writing this, the situation has changed. Even with two transfusions of plasma to lower her bleeding times, they are still too high to safely have the chest tap tonight. So she'll get even more plasma through the night, and they'll do the tap tomorrow morning instead. The CT is still on, but probably won't happen before 8pm or so.
~~~~~~~~~~~~~~~~~~~~~~~
We still find ways to pass the time, though, and not just by staring at her vitals displayed on the overhead monitor. Last night we heard a strange noise coming from Annika's bed. Jörg went to investigate, leaning his head in close to Annika's. A bubble of mouth goo had collected around the tape on her breathing tube, inflating and deflating with the ventilator's puffs (her breathing tube is a little leaky). He rose back up again, a huge smile plastered on his face. "It is Annika! Come here, quick! It's hilarious. She sounds just like Daffy Duck!" Dear Annika, when you read this, please forgive us. You know it's all in love, don't you?

28 Comments:

Anonymous Anonymous said...

Still praying...

Frank (Marisa's Dad)

12/30/2005 10:16 PM  
Anonymous Anonymous said...

It sounds like you balance so beautifully, Moreena--like you're really *with* Frankie when you're with her, and so attentive to your dear Annika.

I can only imagine the kinds of jokes that get you by. Annika will only love you all the more for your sustaining humor. (Or at least this is the raft that I cling to.)

Good luck with the tests.

xo Catherine

12/30/2005 10:18 PM  
Blogger Phantom Scribbler said...

Both of your girls will read this someday and be awed by your ability to face the most stressful times with humor. As we are awed.

12/30/2005 10:18 PM  
Blogger Running2Ks said...

Moreena, your humor in this--all of the parents' humor is amazing, and a gift.

My prayers and thoughts are with you. Thank you for the phone call too--I really did appreciate hearing from you. Stay strong, my friend, and your girls will strenghthen with you.

Hugs to Anni and Frankie too :)

12/30/2005 10:29 PM  
Anonymous Jamie said...

Still sending thoughts and prayers to you all, Moreena.

12/30/2005 10:39 PM  
Anonymous Joanna said...

As Running2Ks said, we really do appreciate hearing from you Moreena. I am anxious when there is a long break between your messages knowing that often means Annika is having a tough time. I know time must virtually seem at a standstill for you although hospital life is relentlessly busy and a "sedated" child does not mean you get any form of rest. You are doing so BRILLIANTLY giving both your girls exactly what they need. You are a SUPERMUM, stay strong. Let us know if there's anything else you need or anything that would help a little.

12/30/2005 10:50 PM  
Blogger Jenn said...

Moreena,

I can't tell you how many times Shelby and I have watched and listened to the Anni and Frankie clips. I long for that fall day with the leaves flying everywhere. One of these days I call and get to talk to you. I have had some great conversations with Joerg, though. Miss you guys so much and wishing we didn't have Miss Riley with the 102 temp so I could drive in and give you lots of hugs and coffee in person.

12/30/2005 11:00 PM  
Anonymous Anonymous said...

Moreena,

It sounds like you are handling this better than most of us would! My heart and prayers are with you and your family. Get well soon, Annika, and show your folks what little girls are made of!

Crystal, Trenton's mom
www.caringbridge.com/visit/trentonlamadline

12/30/2005 11:05 PM  
Blogger Sarah said...

Moreena, your strength amazes me. Prayers being said for Annika constantly.

12/30/2005 11:23 PM  
Anonymous Rowan said...

I can only imagine the challenge of maintaining "normalcy" with Frankie while needing to feel comfortable in the otherworldly environment of the PICU. You handle it with such grace. I, too, am glad to see that you can retain your humor...it is always a good sign.

Here's hoping that all tests go well.

12/30/2005 11:27 PM  
Blogger Kathryn said...

Your juggling act is truly amazing, Moreena...Both your treasured girls are hugely blessed in their parents.
Be blessed yourselves.
Still praying xx

12/31/2005 4:22 AM  
Anonymous Shelley, mom to Caroline said...

Thank you for the update, Moreena. I am amazed by your courage and grace under such difficult circumstances. Your children are truly blessed to have you as their mom. Many prayers still coming to you from Virginia...

12/31/2005 7:25 AM  
Anonymous Mary M - Kaitlyn's Mom said...

Moreena,
God Bless you and your family. You have the strength of superwoman. You are an inspiration. I know many days you may feel differently, but the road has been long and some down days are ok. Thanks for keeping us updated on Annika. She is the first girl I check on each morning and night.
Get better soon Annika.

Many Hugs to you all,

12/31/2005 7:34 AM  
Anonymous Beanie Baby said...

Moreena, I am so happy to see this update. You have no idea how many times I check each day to see what the latest news is!

I can't think of anything to say that hasn't already been said by many others, except that your girls are so lucky to have you.

12/31/2005 8:23 AM  
Anonymous moirasmom said...

Keeping you close in prayer.
Stay tough Annika!

12/31/2005 10:40 AM  
Anonymous peripateticpolarbear said...

So, blogger ate my comment that I left yesterday. I'm sure it was brilliant and pithy and just the right words....today, alas, nothing comes to mind, other than (o).

12/31/2005 12:36 PM  
Blogger Rev Dr Mom said...

Moreena, you and Annika and all your family remain in my prayers. Thank you for sharing your story with us so beautifully.

I wish that there were something else we could do to help, but know that we care about you all.

12/31/2005 6:21 PM  
Blogger liz said...

Everyone else has said what I wanted to and more.

Continuing my prayers for Annika. Love to you all.

12/31/2005 7:13 PM  
Anonymous chasmyn said...

((((HUGS))))

Brings back such memories.

You're a wonderful Mama.

1/01/2006 1:06 AM  
Anonymous Savannah's mom said...

Praying for you guys...

1/01/2006 1:26 AM  
Anonymous Robyn, emma's mom said...

Continued prayers

1/01/2006 8:03 AM  
Anonymous Miriam said...

Always thinking about Annika and the family, always hoping and praying. Your ability to hold it together is amazing! Hope we get to hear really good news soon. And glad Frankie is eating all that food! Take care.

1/01/2006 10:16 AM  
Anonymous Anni Metz said...

I'll keep praying for your family and hoping that the new year brings healing to Annika (and to Frankie's diet!) and that yall will be home and healthy and happy and able to celebrate Christmas soon!

1/01/2006 10:34 AM  
Blogger Yankee T said...

With you in spirit, every moment.

1/01/2006 10:49 AM  
Anonymous Anonymous said...

I just stumbled upon your blog. I'll be praying for Annika and your family.

1/01/2006 12:46 PM  
Anonymous Jill said...

Annika and family- Just want you to know we are still praying and thinking of you guys daily. I look forward to hearing about how much you have to say and how active you will be when you finally are able to talk and move about again.

1/01/2006 5:28 PM  
Anonymous Crystal-tigerlily's mom said...

Hoping your new year brings new hope and lots of healing. Many prayers to you all.

-crystal and tigerlily

1/01/2006 7:28 PM  
Blogger hartgirlies said...

Hello! My name is Shelly and I found your blog a while ago. I will have to read on to find out what is going on with you, but I found your blog through a search I did on Dr. Superina and Rex Shunt surgery. My daughter, Aubree, is 10 years old and is having a Rex Shunt surgery for portal vein thrombosis too. She has several other medical conditions, but it sounds like you are going through a much rougher time. The amazing thing about Children's, is that I am always so humbled when I go there. There is ALWAYS someone that is much worse off than we are. I would love to talk to you about the Rex experience. She has had some minor surgeries in recent years, but has not had any major ones since she was a baby. I am trying to prepare her for everything without scaring her half to death! Please check out my blog: hartgirlies.blogspot.com
I would love to have any tips on getting through the process. Things were rought when she was an infant, but a little more complicated now that she is older and know what is going on. My email is hartgirlies@yahoo.com.
God Bless you! I will keep you in our prayers. I can relate so much to the feelings of choosing between kids. I have 3 other daughters at home and it is really hard on them. They are all so close because they realize the importance of each other and how delicate life is. I wish you all the best.
Shelly Hart

4/13/2007 9:39 PM  

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