Sunday, January 10, 2010


            It happened just like the last time, with familiar signs: exhaustion, increased spasm, an overwhelming desire to sleep.  These were, Brooke says, signs that he should have picked up on from the last time he had a urinary tract infection.  This time they started manifesting themselves on Friday afternoon.  He was drawing with his left hand some plant forms that a friend had brought, an artist friend who has a special method of teaching drawing by simply looking at the forms in front of you but not paying any attention to what you are actually producing on the paper: look at your subject, but not at your result.  After a few of these exercises, Brooke was completely exhausted, and then later he could not finish his stationary bike session; he lasted just seven minutes, when he normally does twenty.  In addition, his spasms began to increase markedly; sometimes when his upper body was being lowered in the bed to a supine position he would spasm so hard that his back would arch violently, and it took a minute or more to calm down. All these symptoms began to increase on Saturday morning, so that he could only do an hour of trach mask in the morning and a half an hour in the afternoon—a far cry from the total of seven hours he’d reached some weeks earlier.  He was so exhausted by the late afternoon that everyone was aware that something was going on.

            The fever began around then.  The nursing staff stepped up the frequency with which they monitored vitals, and that made it possible to watch the fever spike up:  37.8, 38.9, 39.9--that's 104 Fahrenheit, a fever you wouldn’t want to see in anybody, adult or child.  He grew warmer and warmer--no, hotter and hotter, until he felt as if he were burning up, but at the same time his hands and especially his feet were ice cold.   For quadriplegics, a slight rise in body temperature is interpreted as a catastrophic rise; the connections between the brain and the rest of the body beneath the lesion level have been disrupted, and thermal regulation is disturbed; there is no way for people with Brooke’s level of injury to regulate their temperature in any accurate way.  This is a condition one simply has to live with, though it may improve somewhat over time.

  The hospital staff was right on top of the spike in temperature and adroit treatment, including ice packs, brought the fever down.  This drop was accompanied by the classic sweating when a fever “breaks”—sweating on his arms and hands, where quads aren’t supposed to be able to sweat below the level of their injury, another symptom of the incomplete nature of that injury.  By late at night things were stable again, and three large bags of antibiotics were hanging one after another from the IV pole by his bed.

            This stuff is scary.   We were aided through this ordeal by a boyhood friend of Brooke’s who was visiting from Maine.  Brooke says it was really good to have somebody else there to alleviate some of the loneliness and isolation of this situation, especially someone who doesn’t panic or exacerbate the fear which goes with something like this.  As his fever was spiking, Brooke had confessed that he was afraid, and he’d asked to call a family member who has a medical background;  later he said he hadn’t thought he’d get through the night.  He asked one of the very trusted medics whether he’d make it; and this medic was reassuring in a calmly persuasive way—this when Brooke was burning up and his teeth were chattering, and he felt, he said, worse than he ever had so far.  The night was punctuated with nurses bringing IVs and pills and cold packs, and  one of the nurses had attempted to administer some of the medications, but he was so tired that he couldn’t respond to her repeated calls of his name in different intonations; afterwards she said that she had hardly ever seen somebody so tired.  She kept saying Brooke, Brooke, BROOKE, in different ways, and he’d respond but go to sleep again in about five seconds.  But things had begun to subside, and by morning—a clear, beautiful morning—things were clearly better.  The fever was gone, even if exhaustion was left in its wake.   He was grateful for the friend from Maine’s reading the op-ed pieces from the Times in the morning, even if barely able to digest them, but by evening was back to pretty much his normal self. 

            What’s the bottom line here? Unpredictability.  The suddenness of real threats. Brooke says, as bad as things can be, they can get worse sometimes.  What’s important about being in a hospital, both positively and negatively—hospitals are full of bugs, as is well known, but as also skilled in treating them.  But infections are a continuous risk, especially for someone in Brooke’s current situation, with many routes for infection: an open wound, a Foley catheter, a ventilator, a PICC line, all easy routes for invasion of an already vulnerable body.  We can’t take anything for granted, we know, and treasure (almost) every minute of continuing existence.  But these sobering thoughts are in the background at the moment, as we lie together in his extra-wide hospital bed, in the dusk of early evening, composing these notes to you.


Lorraine Seal said...

Again I thank you for your candour. I have an idea of how terrifying and overwhelming this experience is for both of you. Your post today reminds us all, again, just how vulnerable is Brooke’s condition. As far away from the hospital room as I am, I go along, generally under the assumption of progress toward the time when he can go home again and then -- boom -- there’s another post about another life-threatening setback.

Brooke, you’ve given us insight about how terrible and frightening this latest episode has been. Thank you for enduring through the pain and fear. I’m sorry you’re suffering all this. And, Peggy, I have some idea of how horribly hard it is to watch, essentially helpless, as someone you love as you love Brooke suffers like this. Thank you for the continued reminders of our shared humanity.


Gale said...

I didn't fully realize what a fearful ordeal you had been through when I talked with you and Peggy on Sunday.

I'll be up to see you as soon as I have recovered from trivial injuries suffered in a ridiculous encounter with a garbage can.