Annika's continuing hallucinations and difficulties sleeping over the weekend led to a full neurological workup. First they did a quick EEG to see if any red flags popped up. The short study looked good, but they decided to do an MRI of her brain and a 24-hour EEG to get a better picture. For the 24-hour EEG they wrapped her head in white gauze, mummy-style, to hold the many rainbow-colored EEG probes sprouting from her head in place through the night. Annika was not happy with her new head gear, nor was she pleased with the computer monitor placed beside her bed, with black lines squiggling across the screen every time a thought entered her head. She spent the night turned on her side, staring blankly at the screen, as if she could wish it away with the force of her gaze.
Snuggled beside Anni in the bed, I gazed down at the snowy turban on her head, smelling faintly medicinal from the hospital tape, which never smells like regular tape. At the center of the headwrapping a hole was left open for the wires of the EEG to come through and connect up to a black box left on the head of her bed. A few stray blonde curls escaped through this same hole, and looking down at those little hairs, which had wriggled free of the gauze trapping the rest of her hair, I felt a little sad to think that her problems might have spread beyond our perennial liver issues. I had no idea what to make of the angry scratches of black that covered the screen when Annika cried, as she had done most of every night, that everything was getting "covered in goo
Still, she was keeping her eyes open almost all of the time, and she was requesting that I read to her nearly constantly. Our backyard neighbors had sent Annika a package with the first two Little House on the Prairie
books, and she loved listening to the long, seemingly endless descriptions of the prairie grass and the changing light across the prairie and the laborious details of the work of everyday life back then. Of course, there are also some scary scenes in the book, with wolves and panthers and fires, and I hesitated to read such descriptions to a child suffering from terrorizing hallucinations. In the end, I left the scary things in the story, but I edited those scenes by skipping over some of the more dramatic detail Wilder lavished on her childhood nightmares, and thus got to her comforting conclusions more quickly, when Laura and Mary settled in at Pa's knee to reflect on the coziness of their lives together.
Last night we settled in for a sleep on the least amount of drugs that Annika has been on since her bowel perforation and abscess were discovered over a month ago. Annika insisted that she was not sleepy, not really
, but as I read the description of Christmas on the prairie, and wondered to myself if she has yet realized that she missed her own Christmas this year, I saw her eyes close and her breathing slow. Putting the book up safely above her head, I settled in beside her, not even daring to leave the bed to turn down the lights for fear of disturbing her.
Nights in the PICU can never be described as peaceful, and we're neighbors now with an adorable baby boy who has a trach
hooked up to his home machine, which has a beep designed loud enough to wake sleeping parents when there is some change in his breathing. Evidently being awake is disturbance enough to set off this sensitive machine, and there is no volume adjustment in recognition of the fact that, in the PICU, someone is always awake and watching. And, in addition to our neighbor's loud beeps, Annika's PCA (patient controlled analgesic, i.e. the dilaudid pump) beeps even louder than any of the regular IV pumps, as if it is worried that everyone around might be in a dilaudid haze and miss its warning signals.
Still, our night last night was as peaceful as any we've ever had here. Scrunched into a little corner of Annika's bed, with the side rail up to keep me from flopping to the floor, I occasionally awoke to a numb arm or leg, protesting the lack of blood flow resulting from the awkward positions I took up to avoid laying on or pulling any of Annika's lines. When I tried, carefully, to shift my position and regain feeling in my extremities, Anni would stir and reach out her arms, stiff with armboards supporting her IV's. "Stay," her little creaky voice would command. And I would say, "Of course I will," and then find a new uncomfortable position for sleep.
Finally I awoke with the feeling that it was morning, although the window behind us was still dark. No bright and clear dawn to signal the new day, but when I looked at Annika's eyes, already wide open, I saw a brightness and clearness there that more than made up for the dark. Looking up at the large wall clock, I saw that it was 6 o'clock, Annika's normal waking time. Then I felt a new discomfort. Not the stiffness of arms and legs, but a feeling of my pajamas hanging on me too heavily. I reached my hand down to the bed, and felt that I was laying in a huge pool of wetness. I looked at Anni and said, "This bed is really wet." After so many mornings when we both awoke wet from Annika's night-long sweats from fevers or withdrawal or both, I was surprised when she explained calmly enough, "Yes. And that is because my diaper is leaky."
I stepped out of the bed and my sweat shirt and pants drooped wetly off of me. Annika observed, "You are going to need some different clothes, Mama. I think you need to call the nurse. I think I need to be changed and get dry. I think I am thirsty for some ice water. I think I need some breakfast." With that long speech, run together in her adorable voice (for proof of its undisputed adorableness, check the links to recordings of her singing on the sidebar), I welcomed back my oldest daughter, with her flights of fancy and take-charge attitude.
How we have missed her.