Monday, December 26, 2011

Ain't No Joy In Mudville -A Running Diary of Three Weeks in China Medical

“The Outlook wasn't brilliant for the Mudville nine that day
The score stood four to two, with but one inning more to play…” -Thayer

The following are journal entries from Xian’s three weeks as a patient trapped in China Medical University Hospital. My reason for publishing these pictures is to show how brave and awesome my daughter is and was during that time, but to also encourage parents to seek second and third opinions from doctors, to challenge medical authority, to do research on your own, and especially in Asia, to demand quality service from physicians.
“A straggling few got up to go in deep despair. The rest
Clung to that hope which springs eternal in the human breast…” -Thayer

(Day One, Afternoon) When she first entered the Emergency Room I thought it was routine, a bad cough at worse, prescribe some antibiotics and let’s get out of here. I had no idea she was suffering from a bacterial infection on her lung. I started racking my brain, she had been complaining about tightness in the chest, but I just thought that was asthma. The first night I just sat in the chair kicking myself, couldn’t we have caught this sooner.
“They thought, if only Casey could get but a whack at that -
We'd put up even money, now, with Casey at the bat….” -Thayer

(Day Two midnight) We move from the ER to the PICU by Volkswagen van, sandwiched together with other patients, the iv bag connected to a screaming infant is hanging from a bent rusted nail between my legs, Xian is behind me in the seat, her hand straining through the other bodies to hold onto my finger as we race through traffic.
“And when, responding to the cheers, he lightly doffed his hat,
No stranger in the crowd could doubt 'twas Casey at the bat…” -Thayer

(Day Five, Morning) We’ve just had a quick sit down with the doctor who has finally arrived. After battling with nurses in the PICU and sleeping on benches outside in the waiting area and looking at undecipherable x-rays, we finally see the doctor. Xian’s condition is very severe. Blocked breathing passages, intubation procedures, pig-tail surgeries, and fluid drainage. Further surgeries are discussed and a mortality rate is mentioned. The specialist is furious, she won’t take our questions. We want backup plans and contingencies and she just scowls. I ask her point blank, “Do you have children? You don’t? Well then what do you know about it?” The meeting ends, and I am escorted back to the waiting room.
"Close by the sturdy batsman the ball unheeded sped-
"That ain't my style," said Casey. "Strike one," the umpire said." -Thayer

(Day 6, afternoon) We are still in the PICU, stranded outside behind the big pink metal door. Parents aren’t allowed to go inside. There is a little call box at the door and I hold the buzzer and plead to be allowed inside. An hour later a nurse arrives and explains I cannot enter because of fear of infection. The elevator door opens and a groaning man in surgical bed is pushed through the hall, all of his equipment, heart monitor, oxygen tank, iv bag, are hanging from the bed as two orderlies roll him down the hall. I turn and the door has been closed in my face. I stand back and take my place along the wall of filthy plastic chairs and wait.
"The sneer is gone from Casey's lip, his teeth are clenched in hate;
He pounds with cruel violence his bat upon the plate. " -Thayer

(Day 8, Morning) SungJoo has been amazing, I have to basically drag her from the hospital just to get a cup of coffee. She blames herself and she shouldn’t. To her credit, while all the other mothers take the doctor’s advice and sit quietly, she barges into the PICU and demands to see the attending physician. I thought they were going to call security. She has files upon files of questions for the doctor and demands the best treatment, it is the first time in a long time that I realized she is stronger than me, that I am not doing enough, that I need to be bolder, that I am failing my daughter.
"And now the pitcher holds the ball, and now he lets it go,
And now the air is shattered by the force of Casey's blow." -Thayer

(Day 12, morning) I am standing by the window watching the first light come in over the city, Xian is laying fast asleep under blankets brought from home. I’d spent much of the night holding her hand as she winced in pain at the doctor’s brutal hands and reading her stories: We finished John Fitzgerald’s Me and My Little Brain, Louis Sacher’s Holes, and a number of American poems including her new favorite, Casey at the Bat, which she made me stand up and act out. She loved the part where Casey lets the first two pitches sail by but on the third, is poised for greatness. As I watch her, my brave little daughter looking back at me, I realize once again how much we need poetry in our life, something to keep us moving… sometimes words are all we have...
"Oh, somewhere in this favored land the sun is shining bright;
The band is playing somewhere, and somewhere hearts are light..." -Thayer

(Day 15, afternoon) Xian is feeling better and there is the beginnings of talk about going home. She only uses the respirator to sleep and there is a chest percussion instrument we must use to beat her chest and back to loosen up consolidated masses in her lungs. The nights are sleepless and hard. The nurses barge in saying nothing. They lead with needles and say nothing when Xian scowls. The doctors are brutal, using my 8 year old as a translator. I block them at the door, try to get answers. Nothing. I want out of here so bad.
"And somewhere men are laughing, and somewhere children shout;
But there is no joy in Mudville - mighty Casey has struck out." -Thayer

(Day 17, dawn) Trying to sleep, wake up with asthma attacks. The hallways are empty except for the screaming of little babies. There are cockroaches on the toilet and mold on the air-conditioning vents. Xian is awaken by the doctor who barges in the door and says we must go downstairs. I ask where, he doesn’t answer. I ask him again, and he stumbles…explains, ultra sound. Okay… as we step into the elevator, a nurse pushes a rolling incubator in beside us covered in a blanket. Inside there is a small red infant. Already we have seen two babies die. Both in the PICU: One had an enlarged heart, the other had brain surgery. My only memory of this is just seeing the doctors in white coats standing around the staring at the child connected to the machines by tubes.
In the elevator I take Xian’s hand, inside the incubator the baby is groaning and screaming out. The doors open and we hurry out. Into the ultra sound the doctor oils the machine and begins rubbing the cold handle against Xian’s ribs causing her to cry and squeeze my hand. No response from the doctor who begins labeling the screen: Heart, liver, lungs… this goes on for twenty minutes. When he is finished the two doctors leave the room and I am left to wipe Xian up, fasten her robe, and carry her back upstairs. The doctors say nothing to me. I am furious. I stop and tap the operator on the shoulder. I want him to explain. Tell me why you are writing notes on my daughter’s organs. Explain now. He scoffs.
Four hours later the lead doctor is in Xian’s room holding a clipboard between us with pictures. She says the consolidated mass in Xian’s lungs has gotten smaller and her white blood cell count is stabilizing. It is a numbers game now. I rest easy. It will be three more days before Xian can go home.
(Casey at the Bat by Ernest Lawrence Thayer first appeared in William Randloph’s Hearts’ paper, the San Francisco Examiner in June of 1883.)

When we are released from the hospital I can’t tell you the amount of joy and relief we all felt. Toward the end, Xian was literally bouncing off the walls. There is still a lot of treatment left for her to finish, but it’s Christmas, and my daughter being home is all that matters. The thing is, no one ever imagines that this will happen to them. One minute you are planning vacations and buying stocking stuffers, the next minute you are standing in the ER ward listening to a doctor speak in Chinese about the fate of your child.
That night, as Xian was laying in bed, wrapped in blankets by the space heater, I started to read Casey at the Bat again, but she said she didn’t want it. Wasn’t there something new? Something I hadn’t read in ages? Of course there is sweetheart, of course.

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