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, January 06, 2006

milestone

Annika's first word was "more." And her second. And also her third. So, yes, she is extubated! All that breathing is now being done on her very own. Well, of course, there's a lot of oxygen being blown into her nose, but, you know, there are people paying for the privilege of nasal cannulas at oxygen bars around the world, so I can't freak out about that too much. In an amazing show of lung resilience, Annika went from needing very high ventilator support on Saturday before the chest tube was placed to requiring only pressure support all through the night Tuesday. So Wednesday at noon they removed the breathing tube. The first several hours off the ventilator were were unbelievably wonderful. She was still sleepy from the sedation, but when she awoke, she was calm and responsive. Since she had been on the ventilator for so long, the doctors didn't want her to drink anything until the next day, just to be safe. But of course, her mouth was dry and throat sore from the tube (and you can't swallow your saliva with a breathing tube in). So I offered her a pink mouth sponge dipped in water to clean her mouth. Of course, she took it in her mouth and sucked on it eagerly, moving her tongue all around the ridges of the sponge's star shape. The sponges are attached to a little cardboard lollipop stick, and I pulled it back out after a few minutes. She looked at me with her bleary, drug-shrunken pupils and said, "More." I tell you, it was more of a moment than her actual, very first word. Annika was a late talker, not really taking steps toward verbalization until well after her second birthday. The speech therapist working with Annika suspected that part of her problem was lack of abdominal strength (try talking out loud and put your hand on your abdomen while you do it -- see how you have to tense those muscles to control the air flow that powers your voice?), so she taught her some hand signs to speed up the process of communication. The first sign that she really took to using was the sign for "more." So she's consistent, at least. But her first spoken word as a child? I couldn't actually tell you. You know how it is -- they start making these little vocal noises, and you, the eager parent, listen with ears ready to assign meaning. But it's always kind of hard to identify the moment that a word is actually used in all its word-like glory. So you end up saying that "daddy" was her first word, despite the fact that the sound she was making, "da," was used to refer to mommy, daddy, the cat, ducks, cars, birds, bathtub, and once perhaps even a hairball from the cat excitedly discovered on the floor one morning. (And, just to be clear, "excitedly" here refers to Annika, not me. My own opinion of hairballs is somewhat less touched by wonder.) Yesterday's "more," though, was unambiguous in its intent and execution. Coming out in a creaky whisper, she was perhaps shocked when I jumped up and said, "Oh, that's wonderful, Anni! I can hear you!" Unfortunately, she couldn't see the huge smile on my face under the mask we now have to wear around her. Oh, that's the other thing. We now have to wear masks and gowns at all times in Annika's room. The nurses wear gloves, too, but we go bare-handed so she can at least feel the skin of our hands stroking her head. Then we're just careful to wash our hands when leaving the room. She's tested positive for a bacteria called B. cepacia from her breathing tube. It sounds horrible to have bacteria down in your lungs, but of all the bacteria that could have turned up, this is one of the more friendly ones. At least friendly for her. For children with cystic fibrosis, this is an incredibly deadly bacteria, so she's in contact isolation to prevent spreading the infection to any of the CF kids. This bacteria could also cause problems for her if it turns up in her blood or in her urine, but so far it's only shown up in cultures from the (now gone and good riddance) breathing tube. Naturally her extubation has been a source of incredible joy and celebration for us. But it's never all good news in the PICU. It just doesn't seem to work that way. Two days ago Annika had a very bad day. Her sedation started wearing off a bit too much as they were in the process of waking her up, anticipating getting her breathing tube out. In her goal-oriented wakefulness, she took her tongue and pushed at the breathing tube until the tape was loosened and it was dangling a bit precariously out of her mouth. While waiting for the x-ray tech to show up and check if she had moved the tube out of proper placement, her nurse stood by her bed and held the tube in place. Meanwhile, Anni was waking up more and more and becoming more and more panicked. Then everything went a bit chaotic. She spiked a fever, threw up, put out a huge amount of old, dark blood into her diaper, and began crying in either pain or fear. After an emotional hour, she finally received enough sedation to put her back to sleep and we all recovered ourselves. Despite the extra sedation, she still proved herself strong enough over night to have the breathing tube removed the next day. But since she no longer was on the ventilator to make sure she kept breathing, the doctors decided to switch out her drugs to begin the weaning process in order to avoid being so sedated that her body forgets to keep breathing. Just a few hours after the switch, she woke up in a distressing state of terror and agitation. The first thing she tried to do was pull out her arterial line. With her teeth. After the failed attempt at gnawing her right hand free, she decided to go for her Foley catheter instead. She had removed the tape tethering it to her thigh before I caught her hand in mine. By the time we had gotten the catheter retaped to her other leg, she had shifted her energies to removing her NG tube. Insufficiently taped, she finally hit upon success. A short-lived success, as it of course needed to be replaced in the morning, but I'm sure it was a rush nonetheless. Giving her the affectionate nickname, "Houdini of the PICU," we put immobilizers on both hands (not on the elbows, since I still wanted her to be able to move the arms after being motionless for so long), which we soon learned to cover with terry cloth slippers after she wiggled her hands out with apparently very little effort. As the night progressed, though, her situation only got worse. She was unable to relax for more than a few minutes before her body began trembling and she would awake with a jolt, seeming frightened and confused. We thought maybe she was in withdrawal, so we gave her more of the drugs that are supposed to help with withdrawal symptoms, but they only seemed to make things worse. She fought all night, and I stayed beside her all night long, holding her arms and not sleeping for fear she would hurt herself. Her nurse spent the night paging doctors, trying to figure out what we could do to help her. Throughout all this, she began spiking fevers again on a regular basis. And then her chest tube, scheduled to be pulled the next day, suddenly began dumping out all sorts of fluid again, 150 cc's in a 5-minute span. So Thursday morning the doctors decided to biopsy her liver, to rule out rejection or any other liver problems as the source of the fevers. They also decided to do a CT scan to check again for signs of infection in her abdomen, although the surgeon has told us that if she does have any more pockets of infection there they are pretty much powerless to do anything about them. So we'll hope nothing shows up there. Although the prevailing wisdom is that her strange behavior throughout the night was due to drug withdrawal, they called in neurology to evaluate her, just in case. So she's also going to get an MRI of her brain, to make sure that the fevers aren't a sign of a bacterial or fungal infection attacking her brain, which might also account for her behavior. For the biopsy and dressing change of her still open abdomen, they tried out a drug from a different class of sedation drugs, and it has worked wonderfully to calm her. So at least we are able to catch our breath, watching her rest, and process the constant flow of information. Because of Anni's new status as cepacia-positive, we had to move to the "cepacia area" of the PICU. Children's is very aggressive, commendably so, in trying to limit the spread of infection between patients, always a battle in hospitals where so many bugs come to live. But this means that we have lost our PICU neighbors, Brad and Angela and their son. We miss their company, and worry about Matthew. Annika and Matthew both were identified as infectious (but with different bugs) on the same day, following in their pattern of lock-stepping together. And while Annika's successful extubation is a huge step forward, Matthew had to be reintubated after a terrifying midnight near-miss episode that left Brad and Angela still shaking the next day when we finally met up. I want so much to somehow be able to hitch Matthew's wagon to Annika's, to have him join her on the path that is generally more improvement than decline. I know that the course of a long-term PICU stay is almost always a series of ups and downs, and his upturn could be just around the corner, but he's been hit with so much more than his share. Here is Matthew's website again, if you'd like to join me in my daily practice of sending him as much healing energy and encouragement as possible.
~~~~~~~~~~~~~~~~~~~~~~~~~~
This was written yesterday, but again I had no chance to connect to the internet to post it until this morning. Last night was again a restless night, but it is looking more and more like her difficulties are due to a bad case of withdrawal. Unfortunately, her body is in such a state that the drugs they usually give to help with the withdrawal symptoms (methadone and atavan) are actually making her feel worse, called a paradoxical reaction. So it's going to be a tough week as her body adjusts. The new drug she's on has allowed her more moments of lucidity, though. Mainly her mood is very sad right now, when she wakes up and realizes where she is and feels all the tubes attached to her. Last night she woke up and looked around until she spotted me. "Mama, I am not well," she said, in a statement sounding one part objective assessment, one part accusation, and one part plea for comfort. I climbed into bed with her, which is so much easier now that she is off the vent, and stroked her hair until she went back to sleep. We have a picture of her up on the door of her room, which everyone can see as they enter. It's this one: hospital dress-up Underneath the photo I added in the message, "Thank you for taking care of Annika." Everyone is anxiously awaiting the return of that little girl with the sweet smile, as well as her counterpart, little mischief maker: DSC03502.JPG

45 Comments:

Anonymous Lisa and Aiden said...

Keep trucking Annika! You strong little one! We can't wait to see that smile of yours! SO proud of all of you. Prayers have not stopped! XOXOXOXOX

1/06/2006 9:48 AM  
Anonymous Anonymous said...

Yay, Annika! She's such a tough one, that Anni.

xo Catherine

1/06/2006 9:51 AM  
Blogger Sarah said...

SO glad to see an update! I am so relieved that you have good news. And, you got to hear her voice! No more silent cries. Annika is so strong, as are you Moreena. Prayers being said on a daily basis.

1/06/2006 9:56 AM  
Blogger allison said...

Oh Moreena (I say with warmth and affection as someone would when they know eachother, and I know we don't). I just say it as one mother would to another, when a child's life is at risk, and you want to just hold on to eachother and block out the fear, and danger. Even though you have never met us, nor probably ever will, we think of you so much, and continue to pray. We're so thankful for the improvements you are receiving. We send care, you cannot see, but hopefully will be able to feel.

1/06/2006 9:57 AM  
Anonymous Becca, Jason and Natalie Ketter said...

Bless you all. You continue to be, faithfully, in my prayers and thoughts. Much love to you, my friend.

Annika - you keep fighting sweetheart!!!

(Oh, Moreena big puddles of tears have formed in my eyes. For we too have been told that Natalie has come this far because she is a fighter. She's got one heck of a rolemodel!)

1/06/2006 10:03 AM  
Blogger ccw said...

Thank you so much for taking the time to provide us with an update. So happy to read that you are able to hear your baby talk to you again.

1/06/2006 10:04 AM  
Blogger Laurie said...

YAY Anni!!! So happy to hear that she is off the vent. Thank you so much for the update. Like everyone else, I'm slightly obsessive about checking this site several times a day hoping for good news. Anni and all of you are always in my thoughts and prayers. Prayers and thoughts also for Matthew. I check his site nearly as often.

1/06/2006 10:10 AM  
Anonymous Josie's Mom said...

Dear Moreena

Congratulations on Annika doing a little better. And thank you for posting the photos. She is such a little darling.

I think of Pippi Longstocking every time I think of Annika (which is quite often, several times a day), because it is the name of Pippi's friend. Josie likes Pippi and all the mischief she causes all in good fun.

I am sending lots of strength to Annika and to Matthew too.

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

1/06/2006 10:21 AM  
Anonymous Shelley (Caroline's Mom) said...

Hooray, Annika! Hooray, to you all! We are so excited to hear that Annika is talking again! Our daughter went through narcotic withdrawal post-transplant; we know how truly unnerving it can be to sit by and watch. Still praying and sending positive thoughts your way!

1/06/2006 10:30 AM  
Anonymous Anonymous said...

Sending much positive energy to help make thinks better for Annika from across the ocean. Stay strong!
--judit, miklós & martin, who are checking in daily

1/06/2006 10:37 AM  
Anonymous Beanie Baby said...

So glad to hear she is extubated. I hope the good news keeps coming, and I hope she keeps surprising them with her progress. Keeping you in my thoughts.

1/06/2006 10:43 AM  
Anonymous Anonymous said...

I know we don't know each other but I've been checking your sight religiously...Anni is in my thoughts as is the rest of your wonderful family...be strong...
a canuck friend

1/06/2006 11:43 AM  
Blogger liz said...

Yay for extubation. I'm thinking of you all the time.

1/06/2006 12:08 PM  
Blogger Scrivener said...

Thanks for the update. And glad to hear some positive news! We're all thinking of Anni and pulling for her.

1/06/2006 12:12 PM  
Anonymous peripateticpolarbear said...

Thank God. I am so happy to hear from you. It sounds like a really rough week. I hope it only gets better.

1/06/2006 12:16 PM  
Anonymous Anonymous said...

So glad for the update!!! Poor little Anni - I hate to hear of the drug withdrawal although I'm thankful it isn't something worse. I pray that she is over the withdrawal soon.

Thinking of you all (and praying!)constantly ~

tina

1/06/2006 12:33 PM  
Blogger Jane Dark said...

Thank you so much for the update! I will keep praying, but am so glad to hear that Annika is hanging on.

1/06/2006 12:39 PM  
Blogger Shelli said...

I will continue with the good wishes for you all.

1/06/2006 1:01 PM  
Blogger Running2Ks said...

Way to go, Annika, those steps are awesome! I hope Matthew can join in her success too.

May your little Houdini keep on doing better and better, bug and germ free, and recover fully!

My thoughts and prayers are with you :)

1/06/2006 1:13 PM  
Blogger Shannon, Little Marisa' s Mommy said...

So glad to see the update. Marisa's first sign was "more" too! She still uses it from time to time. We'll be continuing to pray often. Lots of love to you all.

1/06/2006 1:18 PM  
Blogger Bettie Bookish said...

Anni - Yay for you, getting off that nasty vent. I wrote you a longer letter, but put it on my own blog, so as not to take up too much space here.

The prayers keep coming.

~Elizabeth

1/06/2006 2:30 PM  
Anonymous Anonymous said...

Way to go Annika, I am so happy for you and your family. That is a wonderful step towards home! I hope and pray that everything goes good from this point on! Many prayers and hugs!

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

1/06/2006 2:45 PM  
Blogger Phantom Scribbler said...

I'm so glad to hear that she's off the ventilator. Thank you so much for taking the time to update us, Moreena. I hope we're not adding to your responsibilities.

All of our hopes and prayers are with you.

1/06/2006 3:15 PM  
Blogger Yankee T said...

What Phantom said. Glad to hear from you, but hoping we're not a drag on your energy. Love to all.

1/06/2006 3:50 PM  
Blogger jo(e) said...

Hurray for the good news! And we'll keep praying about the rest ....

1/06/2006 6:04 PM  
Anonymous Robyn, Emma's mom said...

Thank you for updating!
More prayers

1/06/2006 6:33 PM  
Anonymous Anonymous said...

So glad for the update, the upturn, and the "more." I'm still praying for and thinking constantly about all of you!
Norah

1/06/2006 8:11 PM  
Anonymous Mary Lee said...

Thanks for the update! It's been tough waiting, wondering.

When Nora first came out of sedation after her recent surgery and was still intubated, her first handwritten note to us was a very shaky, "water?". I saved it, it can still bring tears to my eyes.

Thank God for the pink sponges and the steady supply of them in the PICU.

Really glad to hear Annika has been extubated.

1/06/2006 8:13 PM  
Anonymous Kristy and Ashlee said...

So happy to see an update! I am glad she is off the vent...and praying very hard every day for her!

1/06/2006 9:05 PM  
Anonymous sabrina and fam said...

We are so glad that the vent is gone. So proud of Anni, she is such a tough cookie. Please tell her Sabrina sends her love and thinks of her everyday. Jacob, Sabrina and I pray for her together every night at bedtime. We will be thanking God for answering all the prayers for removing the vent, as we continue to pray for her recovery and to see those sparkling eyes next door.
Hugs and kisses from the homefront.
Robin, Sabrina and Jacob

1/06/2006 9:59 PM  
Blogger Amanda M said...

Anni - we're pulling for you kiddo!!

Sending lots of spring, renewal, hope thoughts your way...

For my family in the past the celebration of epiphany has been a turning point, that moment where it all starts to get better, one baby step at a time, always two steps forward and one back, but still, that delicate upwards spiral into a bright future....

Hugs! More, more! ;)

1/06/2006 11:26 PM  
Anonymous Kim, Sami and Kyle's mom said...

Praise the lord for good news! I am so glad to hear of Annika's big milestone - yeah no Vent! You go girl - show them what you are made of and go for more, more and more!

1/07/2006 12:26 PM  
Anonymous Jamie said...

I'm so glad you finally posted. I know it's probably at the bottom of your priority list, but Annika (and the rest of you) haven't been far from my thoughts. I will keep you all (and Matthew too) in my thoughts and prayers.

1/07/2006 12:51 PM  
Blogger susan said...

I'm so glad to read some good news! I'm sorry the weaning process is so hard, but I'm so glad you can hear her voice again. I was thinking about that post you had about how hard it was not to hear her talk just this morning.

1/07/2006 1:32 PM  
Anonymous Rowan said...

I'm so glad to hear that Annika is off of the vent. You must feel worlds better having the ability to hear her ask for more. We all know that that's the spirit that moves us toward wellness. And although she is "not well" it is good to know that she is so strong, and determined.

I'm sorry to hear about Mathew and will be thinking of him also. CaringBridge is how I got into blogging. So I know how it is...at least in that respect.

Hopefully they will continue to find the right mix to help Annika transition from the drugs. Withdrawal is such a horrid experience. I feel for you. I, too, have lived the kicking junkie child time. I send you patience and compassion with a huge dose of strength.

Please, know that we continue to think of you from here.

1/07/2006 3:13 PM  
Anonymous anni metz said...

it's so wonderful to hear good news! i hope annika continues to improve and until the day when she can return home, i'll continue sending happy thoughts and well-wishes your way! (well, i probably will after that, too...)

thanks for sharing the pictures! she's a beautiful little girl!

1/07/2006 3:51 PM  
Blogger angela marie said...

I'm so sorry for Matthew, but keep showing him how to do it Anni!!!

On my treadmill today, I was listening to my 'energizing' music (on my son's MP3 player) and as I was slowing down to get off, "Rainbow Connection" came on. My first thought was of you, Moreena, and your family. I prayed throughout that whole song for all of you. It just seemed to fit right.

1/07/2006 4:26 PM  
Blogger Kathryn said...

Now, that post was really worth waiting for! So glad that Anni has shed that tube, and can talk in her very own voice...Now prayers that the withdrawal is soon behind her, and that she continues to make good progress. We so appreciate your taking time to update us. I do hope you get a moment here and there for yourself too...just a hot bath with bubbles would surely be restorative.
Hugs xx

1/07/2006 5:11 PM  
Blogger moxiemomma said...

wonderful news! yay anni!!!

1/08/2006 3:30 PM  
Blogger Running2Ks said...

Just popping back in again to say that I am thinking of you guys, and I hope the weekend showed even more improvement!

1/08/2006 11:39 PM  
Blogger Kathryn said...

Monday hugs and prayers

1/09/2006 6:16 AM  
Anonymous Kim, mom to Sami and Kyle said...

Yeah! What wonderful news! Go Annika, Go!

1/09/2006 6:35 AM  
Anonymous Joanna said...

Moreena
I'm hoping that Annika is more comfortable now and that drug withdrawal is starting to settle. We know you're going to be busier than ever taking care of Anni. We're all sending strength and energy your way and hope your little darling continues to make great strides.

1/09/2006 11:56 PM  
Anonymous chasmyn said...

Yay for no more vent!!! Man, the rollercoaster - keep going Annika!!! My prayers continue to be with you.

1/10/2006 6:12 PM  
Blogger Running2Ks said...

More hugs and prayers this Tuesday evening :) I am at your sevice, if you need anything!

1/10/2006 6:26 PM  

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