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
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
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.