Tuesday, March 20, 2012

Journal / The Fabric of Time

Keeping a journal during all those dark days gave me an outlet, a foundation, something to grab and weather the everyday changes that shaped everything. It was a time of life folding back in on itself, the view from the hospital window of the old neighborhood, the history there, where even Jennifer lived as a child, and the history of the hospital itself, where I was born, where family members had died. Life repeating familiar patterns and doing the best to make memory make some sense of it all—and both memory and events co-existing in the now, both alive and in a dance as one.

Baton Rouge General Hospital
Sunday December 19, 1993

   Everyone rests for a change. Good to see Jen looking comfortable. She dries up after the tube is taken out of her nose. Sinuses were drowning her, producing so much mucus her body couldn’t cope. Her lungs are clearing also. Bill Scott, the Respiration Therapist, says the change from one day to the next is remarkable.

Wednesday December 20, 1993

   Dr. Wen, who is scheduled to do an angiogram, comes by to explain the procedure. A tube is inserted in one of the large arteries in Jen’s leg; up, up to her brain where dye is released (150cc) and then x-rays are taken. He explains risks: 5% chance of complications: plaque flaking off inside of the artery causing a blood clot; possible reaction to the dye; breathing complications (which Jen certainly doesn’t need). Thinking it best not to put Jen through more procedures just to rule out a long shot, seeing if she has a connective tissue disease narrowing blood vessels, (what about the diagnosis of encephalitis?), we tell Dr. Wen to cancel the test. Later, Dr. Rogers agrees the procedure can wait.

   My mother stays with Jen while I go to LSU for the first time in weeks. Dee is at her own doctor’s appointment. They do another EEG while we are gone and the results tonight are encouraging: 6 to 7 peaks in the scale where 8 peaks are normal. Jen had 3 peaks last week. Tears come easily and the fear of expecting too much.

   Jen is moving more tonight, coughing up lots of junk through the trach tube. Oxygen monitor keeps alarming, producing even more anxiety.

Thursday December 21, 1993

   The troops come at 9:30 a.m. and haul Jen on to the stretcher, get portable oxygen bottle, rolling stand for her IV’s, and away we go to the surgical waiting room, waiting for PEG tube surgery by Dr. Howell scheduled at noon. No one knows why we are there so early. Back to her room, waiting, more monitor alarming, longing for some balance:  stomach PEG in for the nourishment she needs desperately now, central line for all the IV’s so her bruised and collapsed veins can mend, some stabilization so she can begin the long climb back.

   Troop movements again, later than scheduled.
   Dee and I sit in the surgical waiting room, feeling so much anxiety it is impossible to voice our fears. Each procedure, setback, infection, is standing on the edge of a precipice, eyes closed, toes over the edge, the high wind of no control roaring, pushing, making steps forward the only option. At 2:10 p.m. Dr. Howell comes into the waiting room and says the surgery went fine, no problems, adding that Jen’s illness is tragic. Amazing how many other people at the hospital know about the circumstances of Jen’s illness; not just the nurses who monitor her, give shots, check vital signs, not just the Aids who change the bed, wash her, deal with the excrement when she does manage to have a bowel movement, not the doctors who breeze in for a moment, or the ones performing various surgeries to combat problems, but people on the fringes, nurses on other floors, other doctors, people visiting other patients that we have no contact with, all somehow know of Jen’s struggle, the dark battle now with an encephalopathy no one knew about while she wandered the halls of BHU, hallucinating, pulling her hair out, wanting the children released.

Wednesday December 22, 1993

   A good night. No complications from the stomach PEG. Doze a few times until 4 a.m. while Dee manages to sleep several hours. Home for a shower and a couple of hours of sleep. Hear the telephone ring but can’t get to it in time. Think of calling the hospital but drift away before I do. Wake up after 10 a.m. and call. Dee says she called around 5 a.m. to tell me Jen opened her eyes. Not the first time that’s happened, the vacant stare, the distance from anything visible in her dark pupils, but still encouraging because we want it to be.
   Back to the hospital at noon. Dee leaves to rest at her apartment. A fairly quiet afternoon: suctioning the trach tube occasionally, talking to Jen, touching her, stroking, patting her hands, willing the words to draw her out, watching the oxygen monitor, the BlankeTrol gauges. Blood pressure and pulse are up in the afternoon. Anne comes in and starts Jen’s liquid meal through the stomach PEG, the pale green fluid is the same color as the paint on so many walls in medical offices and hospitals. Jen opens one glazed eye for a few seconds, long enough for me to ask her is she’s just checking things out.

   Cold, rainy, sleety.
   Leave at 4 p.m. for errands and when I get back Dee and Dawn are washing Jen’s hair with a dry shampoo product. Sean from Respiration does trach care, followed by one of the nurses with a suppository. Since the tracheostomy, Jen has more moments when she appears to be awake, but she looks so frightened, lost, posturing now with facial contortions and trembling legs from staticy commands her brain is sending. Heart rate up to 150 plus which raises the anxiety level in us. Keep expecting the other shoe to drop.
   Dr. Stewart, in another fuzzy outfit, matching jacket and hat, mentions during her rounds that the next stage for Jennifer is a rehabilitation unit of some sort. Seems a bit premature to us but Jen’s illness has spiraled far past Stewart’s abilities to handle. It is Dr. Meadors we depend on and who, we are told, charted that he would decide when it is time to move Jen.
   Long after dark, Dina Smith comes in to visit, arms loaded with bags: a musical stocking, a musical doormat, a small Christmas tree, ornaments, icicles. Hal just can’t make himself come to the hospital, she tells us, seeing Jen like she is would devastate him.

Thursday December 23, 1993

   A long night of posturing. Seems so painful to Jen, her body so out of control.
   Later in the morning, Jen is “awake”--coughing up clear mucus through the trach tube (our favorite subject)--when Stewart comes in again and sees Jen with her eyes open and legs churning.
   Has she talked at all?
   (Virtually impossible with a tracheostomy.)
   Jennifer, do you want to talk to us?
   Jen shakes her head and Stewart is impressed enough with the response to relate the story to Denise who comes in to stop the beeping IV.
   Posturing is less this morning but Physical Therapy decides to bring splints to put on Jen’s hands and feet to hold them in a more normal position, to keep the writhing and stretching from damaging ligaments.
   Aunt Vivian calls. Flowers from Tracey and Sharon.

   Home for a couple of hours then out to LSU to deposit my check and get some cash before the holidays. Back to the hospital mid-afternoon. My mother is visiting.
   In so many ways it is a day like most others recently: carrying on and dealing with the constant monitoring of machines and infections and bodily functions (or lack of them), making an effort at small talk, at being interested in matters outside of the hospital, most times the effort of reading a newspaper or book or watching the TV high up on the wall too much to overcome, walking the halls when the need to escape the room is high, peering into other sick rooms when doing so, making eye contact with other vigilant people, the heaviness of waiting etched always in expectant looks, wondering at other stories of illnesses, nodding at the thin young man in his robe, wasting away from something, AIDS perhaps, wondering at his thoughts as he stands at the end of the corridor looking out the window, knowing (unlike Jen) just how ill he is, knowing the prognosis is dim, dealing with it the only way any of us can, one moment at a time, one after the other, then again and again, moments rushing together so quickly but strung out so endlessly that the fabric of time finally stretches and slows down.


  1. Riveting stuff - I dare to hope now for the best outcome.

  2. A lot I never knew or imagined about this terrible disease, and I continue to be impressed by the strength it required for Jennifer and those watching over her throughout the long ordeal.