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.

Tuesday, January 10, 2006

where the wild things are

In our past PICU experience, the hardest time is when your child is in limbo as the sedation is weaned to allow them to wake up, but they are still on the breathing tube. Believe me, you really don't want to be awake when you're on the ventilator. The PICU attending last week specializes in pulmonology, so he knows a lot about kids on ventilators. He tried telling me that after a child's been on the vent for a couple of weeks that it's not really so uncomfortable anymore. "In fact," he enthused, "I've known kids who have been awake and happily playing cards while intubated." Uh-huh. Meet my daughter, sir. The girl who was still kicking after huge doses of morphine and versed on top of a chloral hydrate and benadryl cocktail. Oh, and also two doses of a paralytic drug. Kicking, I tell you. She's not one to live by the serenity prayer ("God grant me the serenity to accept the things I cannot change; courage to change the things I can; and wisdom to know the difference.") Or maybe it's that she's your typical child, with more courage than wisdom. Although, before I go knocking her wisdom, I should recall that she'd already proven that being intubated is a state that she's perfectly capable of changing herself. So maybe the serenity prayer has just missed out on a category: things you damn well can change, but really, really shouldn't. I know. Nowhere near as poetic. The first night after her extubation was hard, as I expected. I stayed up all night, but greeted the morning with the optimism that every day should be easier than the next from now on. I got a little sleep during the day, but mainly I played with Frankie and did laundry, all with the expectation that that night would be better than the previous one. I could not have been more wrong. Thursday night she began hallucinating. And not friendly things like butterflies and pink elephants, but the sort of things that show up in Marilyn Manson videos. Well, OK, maybe not that bad, but on the other hand the most terrifying dream I had as a child was of a seal chasing me down an ever-lengthening hallway, so I know it doesn't take much at that age. (Yes, a seal, noted for their creepy friendliness and frightening pursuit speed on land. And this was before The Penguin Movie cast seals as the bad guys.) It all started when she awoke trembling and wide-eyed. She began pushing herself off her bed with a frantic determination. We finally got her to tell us what was wrong: she saw fire in the corner of her room. We tried to convince her that there was no fire, and explain where she was, but she clearly wasn't reassured. Finally, exhausted, she drifted back off to sleep. She awoke again 10 minutes later, screaming, "Someone please help me! Help me! Someone!" Tears began streaming down her face as she tossed her head side to side and beat at the air with her arms. The expression on her face was one I'm hoping that I'll not remember long. I tried to hold her, to keep her from hurting herself, and I told her that I would help her, if she would tell me what was going on. "I'm in the dryer!" she whimpered, and she pulled her knees up to her chest and cried and would not be consoled. And the night went on like that, all night long. More fire, more tears, more screams, more terror. The next morning it began all over again. When Jörg walked through the door, she stiffened and began crying. "It's a bear," she declared, when quizzed. We turned on the lights, and had Jörg turn circles while we tried convincing Annika that her father was not, in fact, a bear. I'm not sure we ever fully persuaded her, but at last she conceded that he was, at least, a friendly bear. A med/psych consult was called in, and Annika is now on an anti-psychotic to control the hallucinations. Anni is on a lot of miraculous drugs that have made her joyous life possible, but I have to say that I have never been so grateful for a drug as I was for that teeny little pill that extinguished the fires surrounding her. Now we have to deal with the fears that are more based in reality. She has been endlessly picking at the dressing covering her still open abdomen. The surgeons had hoped that the incision would close on its own after 3 weeks or so, but she's headed for 4 weeks now and the wound is still gaping across her belly. When she puts her hands down there, she can feel that there is a sudden hole at the border of her familiar abdominal scar. Last night she put her hands on either side of the chasm. When I looked at her, concerned that she was trying to remove the dressing again, she only asked me, "Mama, can you put me back together again, please?" I wonder if she's seeing herself as some sort of Humpty-Dumpty right now, afraid that she has been broken irreparably. Plastic surgery came by today to have a look at her tummy and talk to us. Anni's transplant surgeon is beginning to think that she may need a skin graft (using some of the skin from the back of her thigh area) to cover her abdomen, because the fascia may simply be too damaged to reclose on its own.
~~~~~~~~~~~~~~~~~~
Again, I wrote this and then did not have a chance to take the laptop upstairs to connect to the internet and post. So more recent news: After a few days on the anti-psychotic drug, the hallucinations have returned, with an aural component this time. Mainly now she's seeing monsters. A typical conversation: "The monsters are coming! Hide! Please!" "Annika, there are no monsters here. You're in the hospital. We can check the room to show you there are no monsters here. Really. Truly. No monsters." "Yes, there are. Right there. There are five of them!" And just to add to the fun, she's also seeing some sort of goo covering things. Not too clear on what exactly that amounts to, but she's none too pleased by it. Today, Anni's nurse, Genny, and I built her a tent out of sheets, I.V. poles and hemostats. For the nighttime, we folded back the sides and just left it as a canopy so that the nurse can still see her while she's sleeping. It's a pretty cool setup, though, and she loves it. It's great when you can still be a five-year-old and hide out in a tent, even when you're in the PICU.

32 Comments:

Blogger Phantom Scribbler said...

What a brilliant idea to make the tent. I hope it helps shield Annika from all the monsters and demons of this experience.

Thinking of you, Annika, and your family constantly.

1/10/2006 7:44 PM  
Blogger corndog said...

Also hoping the tent helps with the monsters and that the positive thoughts of pixies all over the world are helping however they can.

1/10/2006 7:58 PM  
Anonymous Anonymous said...

Oh Moreena, my god. I'm so glad that Annika's returned to you, but sorry it's so terribly difficult for her right now. And for you. That tent truly was a brainstorm--how creative you continue to be! I can't tell you how much I admire that.

Love to all of you there.

xo Catherine

1/10/2006 8:10 PM  
Blogger susan said...

And what patience you're using as you try to talk her through her fears.

I hope the tent is restful.

And what spirit and will she has.

1/10/2006 8:15 PM  
Anonymous Becca, Jason, & Natalie said...

God Bless Genny. And you too Moreena. Oh, Moreena tears are heavily streaming, I must tell you. Your words have me reliving stuff about our (short by comparisson) PICU stay.

I pray, pray, pray that the bears (unless they are Nataliebear's) and the fires go out very soon. Much love to you all,

1/10/2006 8:18 PM  
Anonymous peripateticpolarbear said...

aw, poor baby.
I hope it gets better soon.
Thanks for writing.
And I'm beaming you my magic dust that will make the tent a super-duper protective monster, goo, bears, fire, dryers and even seal repellant shelter!

1/10/2006 8:20 PM  
Blogger Rev Dr Mom said...

{{{{{{{{{{Annika}}}}}}}}}}}

{{{{{{{{{{Moreena}}}}}}}}}

1/10/2006 8:27 PM  
Anonymous Tammy & Janna said...

I hope the hallucinations stop soon and both of you can get some rest. We are thinking of both of you and hoping every day is an easier journey.

1/10/2006 9:16 PM  
Blogger Sarah said...

Oh, poor thing. You too Moreena. I can't imagine what that must be like for the both of you, the things Annika is seing, and also the heartache you must feel for her. Prayers that things will improve. That was great of Genny!

1/10/2006 9:18 PM  
Anonymous Rowan said...

That is horrible. I am so sorry.

Advice...make everything feel as safe and small as you can. The tent is excellent. Then distract, distract, distract...with as little stimuli as possible. Things like reminscing over calm and happy memories with lots of sensory details. It should help somewhat.

(By the way, I am not a professional. But I did run a free first aid bus on Dead tour for 2 years in my early 20s. So I know a little bit about freakouts.)

1/10/2006 9:22 PM  
Anonymous Anonymous said...

You're all in my thoughts. I'm praying they can find some other magic something to take away the bears and the fire and the monsters and the goo.

Meantime, is there anything at all that YOU need, Moreena? Anything those of us out here could provide or offer? Please let us know.

You're all constantly in my thoughts.

Norah

1/10/2006 9:27 PM  
Blogger Running2Ks said...

I am so sorry that she has real and imagined fears. That poor sweetie! I am also relieve to hear that you all can fix it--help her slay the monsters and soothe her...You are an amazing mom.

May Anni rest easy, and my prayers are with you, as always.

1/10/2006 9:44 PM  
Blogger Jane Dark said...

Oh, I am sorry that this is so terrifying. You are all in my heart and in my prayers.

1/10/2006 9:53 PM  
Blogger Shelli said...

That is really cool! I hope that soon they can get her off all of those mood altering drugs so that she can stop hallucinating and be her sweet self with no fears! God bless you all again.

1/10/2006 10:07 PM  
Blogger halloweenlover said...

This is all so awful, so scary. I hope this passes soon, very very soon.

Hugs to all of you.

1/10/2006 10:31 PM  
Anonymous Stacy - Tanner's mom said...

Moreena - Thinking and praying for you guys.

1/10/2006 10:55 PM  
Blogger Jenevieve said...

Oh, geez, Moreena. Thinking of you and Anni and the rest of the family.

1/10/2006 11:02 PM  
Blogger timna said...

Does she know what a dream catcher is? Would she be able to understand it or would it just be another unfamiliar and scary thing?

1/10/2006 11:06 PM  
Anonymous brooke said...

moreena, not much i can say, except to admire the strength that annika, yourself, your husband, frankie, and the rest of those who are supporting y'all have.

and the tent. absolutely brilliant idea. absolutely brilliant.

1/11/2006 1:23 AM  
Blogger purple_kangaroo said...

I hope the monsters disappear soon, and that she enjoys the tent a lot.

1/11/2006 3:44 AM  
Blogger liz said...

Big hugs from me too. I hope the tent works.

1/11/2006 5:57 AM  
Anonymous Beanie Baby said...

Oh, poor Annika.

With all she's been through it's little wonder she's seeing monsters. I hope this is short-lived--is it the withdrawal?

1/11/2006 6:15 AM  
Anonymous Kim, mom to Sami and Kyle said...

Moreena - I am so glad Annika is doing better and off the vent. I hope the hallucination pass (my mom had the same problem after her transplant in ICU) and Anni continues to improve rapidly. I am looking forward to the day you tell us she is discharged to a regular floor and then on her way HOME! You and Jorg are so amazing... the way you have kept your sense of humor during this difficult time. I really admire you. Someday Anni will tell you how grateful she is that you are her parents.

Gods blessings for continued and speedy recovery for Anni.

1/11/2006 6:30 AM  
Anonymous Anonymous said...

Oh that poor baby! Hallucinations?!! How unfair! She has been through so much. I know she will get through this too. It breaks my heart to think of her so scared. The tent is a GREAT idea - I'm glad it helped.

My prayers continue for you all - Moreena - I know this must be wearing you out.

I'm hoping your next post will bring better news!

tina

1/11/2006 7:17 AM  
Anonymous Anonymous said...

how awful. I've seen an adult friend hallucinating after a bad mix of anti-depressives and alcohol, and although of course she had the knowledge that hallucinations exist, it was impossible to calm her.
How much worse for a child, a nightmare without being able to wake up! It sounds nearly unbearable to watch that, and for days and days.
My best wishes for you both.
(Hannah)

1/11/2006 7:21 AM  
Anonymous Gina said...

Missing you!

Love Anna and Demi

1/11/2006 8:18 AM  
Anonymous Anna said...

I miss you a lot, we finally got this to work! Hang in there! I have to go to school now!

Love,
Anna

1/11/2006 8:21 AM  
Anonymous Sheryl, Justice's mom said...

Yikes. Praying for the return of happier perceptions. As if being in the hospital isn't scary enough for one so young! I'm sorry to hear they're talking of more surgery too but glad Anni can now see, hear, and hold you for her comfort. Brilliant idea with the tent by the way! Super mom and special nurse too!! Hugs to you both...and for family that can't be by her (and your) side!

1/11/2006 1:24 PM  
Blogger mc said...

Chiming in late to say how wonderful I think it is that you are finding ways to let Anni be just a kid in a tent, rather than a sick kid. I hope I can be as imaginative and supportive a parent as you are...

1/11/2006 5:10 PM  
Blogger moxiemomma said...

timna's idea about a dreamcatcher is a wonderful one!

here's hoping anni's monsters get lost soon.

i hope you're able to get some rest, moreena.

1/11/2006 5:39 PM  
Blogger Jess said...

I'm so relieved to hear that things are continuing to progress, even if the progression is not easy. I can't imagine how terrifying that must be for her.

I'll echo everyone who said the tent idea was fantastic. I learned a wee bit about dealing with hallucinations in patients with dementia during the short time I was a CNA, and one of the main things they taught us was not to try to reason with the patients. Your words aren't necessarily strong enough to counteract the thing they are seeing with their own eyes. They said don't try to convince them that the (whatever) isn't there...just help them deal with it. Build a tent, bring in some magic fire extinguishing water, dream catchers, making friends with the bear stuff like that, which it sounds like you've been doing. I don't know much about it though.

In any case, I'll continue to hold you and the rest of the family in my thoughts.

1/11/2006 9:40 PM  
Blogger Reighnie said...

Moreena,

I am continuing to pray for you and your family.

It is so awful that poor Annika had hallucinations and awful for you too.

My bf is quadriplegic and he was in ICU for a bladder infection gone septic. They had him on Adavan and finergin(sp??) and he was hallucinating awful things. At one point he was telling me that he saw some of his relatives that had passed and asked me if I wanted to come with them. It was so scary and it broke my heart to see him that way. It's such a helpless feeling.

I am praying for your continuing strength and for a smooth and longlasting recovery for Annika.

1/13/2006 1:19 AM  

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