Journal II: June 2002

6 June 2002
There are three ways parents live around their PICU kids. Some commute daily from home. Seven lucky families who make it to the top of the waiting list (and can afford it) stay in the hospital hotel. The last group lives like refugees in the PICU waiting room. There, the geometric grid of the hospital carpeting serves to stake out squatting rights. Food is left out, a mother is putting on deodorant while explaining her child’s traumatic head injury. Somehow they all get along with just one t.v., one phone and no privacy. Couples sleep here, spooning one another on pushed together benches like they must do in their beds at home. Here families receive promising and devastating news about their child.

I think I am a snob in their eyes because I rush by there each day and refuse to share my story. I did try but the first waiting room mother I met was obnoxious. She offered me a muffin and told me how proud she was that her eleven year-old daughter, on dialysis, had told her nurse to fuck off that morning. I took the muffin because it seemed like good manners to do so. She attempted to orient me to the waiting room’s unwritten laws – don’t move any chairs, they are already staked out. Always answer the waiting room phone and take a message. Of course, this would only be productive if the hospital provided a note pad, pen and bulletin board.

I stopped her welcome wagon act by curtly informing her I had a hotel room and would spend most of my time in Henry’s room. I did that to distance myself from the waiting room set. I didn’t want to be in such dire straits, even though I clearly am. It was hard enough to talk about Henry to people I knew, let alone with strangers. I didn’t want Henry’s story to become waiting room gossip even though I clearly craved news about other children on the ward.

Why does this crowd, this thrown-together community, bother me so much? Partly because the waiting room is raucous, often more of a summer BBQ environment than what I anticipated it to be: small family clusters, whispering their grief, staying the hell away from me. The waiting room, for me, is the PICU Epic Olympics. Who has a child on the brink of dying? Who is the most heroic mother? Who has the saddest story? Who has such good news that they can’t keep it to themselves?

I try to justify my snobbery. A child with chronic lung failure has a father in the hotel room next to me who has the audacity to smoke in his room – 50 feet from the NICU ward. I turn him in to hotel management, smugly. That one has a child who was hit by a car riding their bike on a busy street without a helmet. I would never allow my child to do that. There are kids here in comas because their parents tried to beat the life out of them. Bad parents, bad hygiene, bad grammar, bad manners. I am different because, with Henry, I just had bad luck.

So I want to believe. I want to think I did everything right when I was pregnant as a diabetic woman. But the doctors never say to Ned, “With your family history of cancer, there is a stronger incidence of heart defects.” But several doctors have started their prognosis diatribes with, “In children of diabetic mothers…” Then they say I shouldn’t blame myself. I want to shove my insulin pump down their throats, show them all my blood sugar and ketone tests. One doctor finally acknowledges they have no way of knowing whether my diabetes caused Henry’s heart to be so malformed, but it’s too late – the damage is already done.

7 June 2002
Happy birthday Henry, my rump roast, my chunky monkey, my beloved. You’re a month old and have never been outside. Breathe unto me, breath of God.

10 June 2002
Surgery was supposed to happen today. I slept for a few hours. Painted my toenails at 4 am. Tried to gauge how this would turn out either way. Last night a rumor circulated around the PICU that one of the heart babies had taken a grave turn. I raced upstairs to make sure it was not Henry. It was another baby, one who would need to take Henry’s surgery slot. Again, I think who have I become that I am glad another mother is in a worse situation than I am?
Dr. Baker comes by to assure us that we could not have found a more technically gifted surgeon than Dr. Knott-Craig to work on Henry’s particular defect. Nevertheless, she warned, Knott-Craig could only work with the heart, as it was, before him. Or, to use her analogy, “it’s like giving Michelangelo crayons to work with.” Good analogy, totally not comforting.

Some good news. Malley is our new neighbor now that they moved us to the other side of the ward. Malley had her aorta replaced but it doesn’t seem to have gone well. Malley is 14 months old but just tiny, it seems hard to believe she weighs more than 15 pounds -- although she has enough strength and verve to have pulled out her breathing tube. Pattye, her mom, is a city prosecutor and identifies the PICU cases up here that are the result of neglect and abuse. I feel giddy. I have a new girlfriend! I have a new girlfriend in the crappiest place on earth!

Our other cubicle neighbor is Storm, a two year-old on a ventilator. No one comes to visit him, ever. The nurses are disgusted with how this child is being treated and eventually he is removed from life support and “allowed” to die. I don’t know who made that call but the nurses can barely contain their disapproval when his mother shows up to reclaim his body. She insists on taking Storm home in her car instead of paying for the ambulance. I try not to demonize her. I’ve done enough of that. Maybe this was the one thing Storm’s mother could do for her child, wrap up his imperfect body she was never able to mend and bring him home. Maybe she just had the bad luck of being so poor she couldn’t pay for an ambulance.

11 June 2002
Surgery cancelled again. Disaster, resolution averted. We didn’t even go back until about 4 pm and were told it would take five or six hours.

About ninety minutes into surgery, Knott-Craig breezes out and my heart drops. “Not to worry,” he insists, “Nothing wrong with your boy. We’re just not going to do surgery today.” Apparently, at the very last minute, with scalpel poised above Henry’s chest, a lab test was rushed into the OR showing Henry tested positive for staph. Another damn infection, this one they suspect from the chest tube they put in after his second shunt. Except, I count, that would have been a month ago. Dr. Knott-Craig explains that these bacteria can remain dormant for a long time and then “suddenly flourish.” Flourish is absolutely the wrong word. We’re not talking about hydrangeas blooming out of Henry, we’re talking about a lethal wickedness manifesting inside my child.

In the end, they scrubbed out his wound in surgery and inserted a g-tube into his stomach so we don’t have to do nasal tube feedings anymore.

Knott-Craig is a character, part soothsayer, part dictator. More time, more faith and less forced feedings, he insists. We must always have classical music playing for Henry he barks to the nurse. I send my mother-in-law, classical music aficionado, to a music store to buy some CDs. I once made the mistake of playing African lullabies thinking that Knott-Craig, our South African surgeon, would be pleased with my musical diversity. Nope, he was horrified as if I were exposing my boy to Linkin Park. He is willing to let Henry listen to Hildegarde of Bingen chants, but only on a limited basis. I cannot believe I am negotiating what my child, in a drug-induced coma, should be listening to.

Knott-Craig insists that we should be able to hold Henry even though I know this makes the nurses a nervous wreck. He says Henry needs human touch, to be snuggled up with to accelerate his healing. “And you must pray for your boy.” I am stunned to hear a doctor urge me to route my faith in him through God.

My own sense of time is completely out of whack. There is the infinite span of time waiting to hear from a doctor – this may be 20 minutes or two days, it doesn’t matter – followed by another infinite span of time. There are no schedules, no places I need to be. Just hang out here with my kid in this PICU vortex, try not to let either one of us slip into the abyss. My life is on hold, Henry’s has yet to begin. I try to remember what I was doing before all this – struggling through statistics coursework, teaching a class, carpooling the kids. None of it seems important now. Now I just want this small miracle – fix his heart, it’s no bigger than his tiny fist.

A long time ago, when Henry was still in the NICU, Dr. Baker was explaining various procedures to us and decisions that would have to be made. She concluded with, “But, ultimately, the responsibility for this child lies upon me.” I wasn’t angry, rather I laughed. If she ever thought her years of training, her medical wizardry, made her ultimately responsible for this child’s life, then she must not know very much about mothers. Henry is completely my responsibility. The doctors’ job is to preserve his life, but mine is to protect the quality of that life. And as each life preserving measures becomes increasingly heroic, the difference between preservation and protection becomes clearer.