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 01, 2006

new year, new tubes

Anni is now the proud, new owner of a chest tube. The CT on Friday evening showed that she had so much fluid in her chest cavity that her right lung was nearly completely compressed. So rather than just tap the fluid, they left a tube in to keep draining it off. In the first few hours of the chest tube being placed, they pulled off 1 liter of fluid out of the chest cavity. Yup, that's 1,000 cc's of fluid. And it's still coming. Is it perhaps the 500th time we've heard the doctors say, "Wow. We never would have expected that! She really looked good for [insert surprising medical finding here]!" ? The good news is that the fluid from her chest doesn't show any sign of being infected. The bad news is that they are saying that she will be on the ventilator for at least another week, and that, evidently, is the optimistic view in which all goes well and Anni doesn't pull any more bunnies out of her magic hat of medical mysteries. I don't mean to sound too overly dramatic. Despite the shocking lack of right lung on the chest C.T., Anni's G.I. says that the C.T. of her abdomen looks millions of times better this week. And she tells us that she is surprised at how well her liver appears to be doing, despite the bowel perforation and massive infection. I'm just sick of having her on the ventilator. It's exhausting seeing your child looking so vulnerable for so long. And, even worse, the massive quantities of drugs she is on (and I have seen enough doctors' jaws drop when the nurses report how much sedation she has required to keep her still for procedures to know that "massive" is a completely accurate description) are beginning to be insufficient to keep her comfortable. Although I don't think she's in any pain, when she wakes up, her eyes dart around the room in a panic. This morning it took her 4 hours to settle back into sleep. No wonder. She's on a ventilator; she's got a huge N.G. tube down her nose (and this is not your usual N.G. feeding tube, this is the kind large enough to pull off blood and lavage her stomach in case of another esophageal bleed); she's got essentially a vacuum cleaner attached to a sponge stuck inside of a huge opening in her abdomen; she's got a chest tube suctioning off liquid beside her right lung; she's got multiple I.V.s incapacitating both arms; she's got a foley catheter to catch her urine; and, the final indignity, she has to wear the most horrible, plasticky, uncomfortable big kid diaper. Still, I think all of this would be bearable if only she had the breathing tube out so that she could at least complain about it all. There's something annoyingly wonderful about being able to air your grievances, even if it changes absolutely nothing about the situation. Witness my entries of the past several months.

46 Comments:

Anonymous Cheryl and Angel Haley said...

I am so sorry poor Annika (and you) are going through so much. Especially over the holidays. My wish for you is that 2006 be a much calmer, happier year health-wise.
With love and reiendship

1/01/2006 7:52 PM  
Blogger Phantom Scribbler said...

I hope Annika can come off the ventilator sooner than they think. If anyone ever had the right to some therapeutic whining, it is she.

1/01/2006 8:04 PM  
Anonymous peripateticpolarbear said...

I am praying for an end to the vent! You are right; being deprived of whining is the final indignity.

1/01/2006 8:23 PM  
Anonymous Josie's Mom said...

You are so right. Being able to complain and let off some steam can feel soooooo good. I hope Annika will be able to do so soon.

Josie's Mom
http://www.mybabymonsters.com
Insights into a child's world

1/01/2006 8:26 PM  
Blogger Running2Ks said...

I am so sorry she is stuck with the tubes, and yet so thankful to hear that she is doing so well, proving what an amazing girl she is over and over. I hope for a healthy (HEALTHY!) New Year for your family. May Anni shout out soon!

My prayers are totally with you, as always.

1/01/2006 8:41 PM  
Blogger candace said...

Makes me think she needs to get off that vent and vent!

I'd like to tell you a little story...

One night a man had a dream. He dreamed he was walking along the beach with the LORD.

Across the sky flashed scenes from his life. For each scene he noticed two sets of footprints in the sand: one belonging to him, and the other to the LORD.

When the last scene of his life flashed before him,he looked back at the footprints in the sand.

He noticed that many times along the path of his life there was only one set of footprints.

He also noticed that it happened at the very lowest and saddest times in his life.

This really bothered him and he
questioned the LORD about it:

"LORD, you said that once I decided to follow you, you'd walk with me all the way. But I have noticed that during the most troublesome times in my life,
there is only one set of footprints. I don't understand why when I needed you most you would leave me."

The LORD replied:

"My son, my precious child, I love you and I would never leave you.
During your times of trial and suffering, when you see only one set of footprints, it was then that I carried you."

written by Mary Stevenson

1/01/2006 9:14 PM  
Blogger liz said...

Prayers for an early departure of the ventilator.

Big hugs to you all. I am thinking of you all the time.

1/01/2006 9:28 PM  
Blogger Shelli said...

I don't even know Annika personally, but I HATE that this is happening to her. Ican only imagine how hard it must be for you, her mother, to sit there and watch her pain day after day. I will continue to pray for you, Annika and your family.

1/01/2006 9:31 PM  
Anonymous Anonymous said...

Moreena,
I think about you and Anni every day and check this site when I should be working!

Anni's one of a kind, but does she have to be this unique?

Sending you hugs long distance.

Mary, Ayden's grandma

1/01/2006 9:46 PM  
Anonymous SABRINA said...

I am sorry that Anika is sick. I miss Annika so much. I hope Annika is doing ok in the hospital and I hope she gets better really fast. LOVE SABRINA!!!

1/01/2006 10:31 PM  
Blogger Jessica said...

I agree, Moreena!

Blessings to Annika....and to you and your family in this new year.

1/01/2006 10:45 PM  
Blogger Sarah said...

We're supposed to be taking away tubes and such, not adding! Prayers for Annika to be able to whine about all of this soon!

1/01/2006 11:12 PM  
Anonymous Rowan said...

And that's about half the reason why we're here. You need witness right now.

I will rejoice with you as the tubes (starting with that vent) are removed. I look forward to hearing about her getting her voice back...of using it to let you know how it was for her...of you being able to hear your sweet Annika.

1/02/2006 12:46 AM  
Blogger Kathryn said...

Oh, Moreena...Lots of prayers for those tubes to depart as soon as is safe...though, reading that catalogue of medical technology I was both distressed for you and Anni and hugely impressed that they can do so much to help her get better.
May that happen really soon.
Hugs

1/02/2006 5:06 AM  
Anonymous Shelley, mom to Caroline said...

Oh, Moreena! We are so sorry that Annika has had yet another tube placed! Like so many others, we check your site many times a day for updates. We are lifting you up with many, many prayers today and every day. May 2006 find you at home with good health for all.

1/02/2006 8:07 AM  
Anonymous Candace said...

We still think of you all every day and are looking forward to the time when those tubes can start coming out.

1/02/2006 8:27 AM  
Anonymous Anonymous said...

Not very many of us mom's look forward to the day when our child can complain, but in this situation, we are all sitting on the edge of our seats, waiting to hear what Anni's FIRST complaint is going to be! And so many things to choose from, where would she start! Good luck to you, Moreena, and your beautiful girls, and wonderful husband. May this year bring less excitement, and more enjoyment!

Crystal

1/02/2006 9:27 AM  
Anonymous moirasmom said...

I too hope she will be off the vent sooner than they think. We had a chest tube as well but Moira wasn't on the vent at the time. She was four and didn't complain about it specifically(she was pretty bothered by everything). It became just one more thing to attach to her wheel chair. I can't even imagine not being able to complain!
A New Year wish for Annika...renewed health. Sending prayers.

1/02/2006 10:37 AM  
Blogger Tree said...

Here's hoping that Annika can get off that vent soon, and that that will be a start to a quick recovery.

1/02/2006 11:16 AM  
Anonymous Becca, Jason, & Natalie said...

All I can say is that I am with you in spirit, my friend. We will be there Thursday, please email me if there is ANYTHING you need us to bring.

1/02/2006 2:28 PM  
Anonymous Joanna said...

Moreena, we are happy to be the ears that hear you voice your grievances and we can't wait to hear Annika voice hers. I hope the docs manage to maintain a good sedation cocktail that works for Annika a while longer until she can start getting rid of some of those tubes (so hard for you to see her uncomfortable). Each day is another step towards that. Take care.

1/02/2006 4:25 PM  
Anonymous Norah said...

Hoping and praying that you get to hear that little voice complaining (and singing, and laughing, and everything) sooner than they even think is possible. She seems to be full of surprises all the time, so I think she has it in her! :)

One of the many, many keeping watch from the other side of the computer...

Norah

1/02/2006 7:10 PM  
Blogger Yankee T said...

Good lord. She deserves a good whine. Bless you, all of you.

1/02/2006 8:53 PM  
Anonymous Jenn said...

Moreena,

Been trying to call you. I guess I keep missing you. Know that I've been trying, though. Thanks for posting messages on my blog. Give Anni (and Frankie) kisses from us Martins. Hugs to you and Joerg. Call me if you have a free moment, otherwise I'll keep trying.

1/02/2006 9:14 PM  
Blogger angie said...

I also hope that Annika gets off the vent soon. I can't wait to hear what she has to say about all of the events that have happened to her recently...and she has every right to whine as much as she wants:) We're thinking about you all!! Hope there are no more bunnies hiding in Annika's hat.

1/02/2006 11:23 PM  
Blogger Jen said...

You're all still in my prayers.

1/03/2006 11:40 AM  
Blogger Kathryn said...

Dropped in with a Tuesday hug. Thinking of you all

1/03/2006 1:46 PM  
Anonymous chasmyn said...

you are so right, except that how could you be being overdramatic? Your little angel is going through so much. It is heartbreaking as a parent to have to watch our children suffer. My heart remains with you.

1/03/2006 2:32 PM  
Blogger trisha said...

Love to you. M.

1/03/2006 9:20 PM  
Anonymous Anonymous said...

I really hope that Annika comes off the vent soon. Hopefully she will turn a corner soon and really start to improve a lot . Are continued thoughts and prayers are with you. tabitha Logans mom

1/03/2006 10:46 PM  
Anonymous sheryl, justice's mom said...

Moreena, all I can think is enough is enough. Praying that Anni is off the vent and with a closed belly soon. We think of you often...

1/04/2006 4:37 AM  
Blogger Jay said...

I'm glad there's some good news here, but reality is still quite frightening!

1/04/2006 5:11 AM  
Anonymous Kim - mom to Sami and Kyle said...

Hi Moreena - I just wanted to say hi and that I hope Annika is stable and getting better. I stop by your website every single day and we are keeping Annika in our prayers. I told Sami about Annika (keeping it fairly high level for a 5 year old) and she mentions Annika in her special intentions each night. You are such an amazing woman and a wonderful mother. Annika and Frankie are so lucky to have you. Hang in there!

1/04/2006 6:20 AM  
Anonymous peripateticpolarbear said...

You do know I check your blog obsessively, right?So if you see like 9million hits from a certain town, it'sjust me. I'm hoping and praying that Anni is soon able to WHINE non stop!(In fact, I think phantom would agree to rigging the wednesday whining festival so that she wins hands down)

1/04/2006 11:15 AM  
Anonymous Kristy and Ashlee from liverfamilies said...

I am just checking in to see how things are going. I am continueing to pray!!

1/04/2006 11:46 AM  
Blogger Tara Marie said...

Dear sweet Annika....you truly are my hero little girl. We think of you everyday and we want you to know that we hope you heal quickly so you can get back home and play, play, play.

Hugs,,,Emma Sage and her Mommy

1/04/2006 12:52 PM  
Anonymous Anonymous said...

Thinking of you, of course, and feeling so lucky to bear witness to your experience.

xo Catherine

1/04/2006 2:04 PM  
Anonymous Laurie said...

Prayers from Annika coming from Orlando, Florida. Moreena, I think of your little precious girl every day. You are an amazing family and your love for your girls is so strong, it will certainly pull Anni through all of this!

God Bless you all!

1/04/2006 6:33 PM  
Anonymous Crystal-Tigerlily's mom said...

We are thinking about you all.

Crystal and Tigerlily

1/04/2006 9:01 PM  
Blogger Shannon, Little Marisa' s Mommy said...

Moreena,

I'm hoping things are going ok. I get nervous when I don't see an update for a few days. Prayers are with you and sweet Annika.

1/05/2006 2:21 PM  
Anonymous Anonymous said...

I'm with Shannon! PLEASE post (if possible) soon - I'm getting worried too!!!

tina

1/05/2006 2:33 PM  
Anonymous Kim, Sami and Kyle's mom said...

Make that triple.... I am keeping the prayers coming for Annika.

1/05/2006 3:32 PM  
Anonymous Shelley, mom to Caroline said...

Moreena, just checking in for the 100th time today... we are also worried and sending many prayers to you. You are all in our thoughts!

1/05/2006 4:24 PM  
Anonymous Anonymous said...

I also have been checking each day and hope that everything is o kay. continued prayers and good thoughts your way . tabitha logans mom

1/05/2006 7:57 PM  
Blogger Reighnie said...

I hope everything is ok. This must be so hard for you,Annika and your family. I can't even imagine.

I pray for Annika and you and your family everyday.

1/05/2006 11:44 PM  
Anonymous Sheryl, Justice's mom said...

Also worrying about update status but hoping that good news is responsible for it. Praying that Anni is extubated and able to tell you not to leave her side...

1/06/2006 12:09 AM  

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