Tommy is a big healthy kid now after brain surgery by Peter Sun, MD, and the Children's Hospital team.
THE BEST CARE IN THE WORST OF TIMES
Modern lifestyles place enormous pressure on the lives of parents: commuting, work, rushing to get the kids to school, spending some quiet time with a spouse…it seems impossible to fit it all in. The stress is only amplified by unexpected trouble: the loss of a job, a death in the family, or, as in our experience, ill children.
As parents of seven children, my wife and I never have a dull moment. But when one child is missing, there is a true void, and when our 14-month old son, Tommy, was admitted to Children’s Hospital & Research Center Oakland, a concerned silence replaced the lively noises of our busy family.
At first, all we noticed was a small bump growing right between Tommy’s eyes. But over the weeks, it grew to about the size of a golf ball. Compared to Tommy’s small baby head, it looked enormous.
Upon reviewing a Cat-Scan and an MRI, our neurosurgeon, Peter Sun, MD, found a hair-like growth that began at the base of Tommy’s brain, and ran to the tip of his nose. Dr. Sun’s greatest concern was whether the hair-like growth was sealed off at the base of the brain. Otherwise, fluid could pass through it in and out of the brain. Access to the brain could lead to infection. Dr. Sun would have to make an ear-to-ear incision over the top of Tommy’s head, pull back the skin down to his nose, and attempt to find out what was in there.
The news of impending surgery devastated us. We couldn’t stop questioning, “What did we do? Why is this happening? Why Tommy?” and, “Why doesn’t Dr. Sun know anything?”
We challenged Dr. Sun at every appointment, and, at times, questioned his judgment and knowledge. I am an advertising supervisor for a newspaper, and I seemed to forget that although I had a degree, it was not an MD. On the other hand, Dr. Sun is one of only 300 pediatric neurosurgeons in the United States, and is the Barry Bonds of pediatric neurosurgery.
In addition to Dr. Sun’s reputation, our doubts were soothed by Dr. Sun’s assistant, Sue Ditmeyer, RN, PNP. Sue was our parental coach through this trying experience. She didn’t say, “It’s going to be fine. Everything will work out.” Such statements would not work; they are written for TV. Instead, Sue told us she could not predict the outcome of the surgery, but she let us know, over and over again, that Tommy was in the best hands and in the best place in Northern California, if not the world.
Before the surgery, Dr. Sun and Sue laid everything out for us. Dr. Sun went over the entire surgery, all four hours of it. He said Tommy’s eyes would swell completely shut, and he would be in some pain. He assured us that Tommy would bounce back quickly; the swelling would peak after two days and begin to subside. He predicted Tommy would be in the hospital for 10 to 12 days.
Surgery went according to plan. Fortunately, the growth was sealed. However, it had become infected, filling up with fluid and swelling, causing the bump between Tommy’s eyes. During the grueling four hours, Sue informed us how Tommy was doing every 45 minutes.
We felt well prepared going into the surgery, but there is no preparation for actually seeing your child with a bandage around his head, looking like a victim of a tragic accident. The worst part was seeing Tommy with his eyes swollen shut. He could hear our voices, and would throw his arms up, asking for mommy. He would attempt to lunge to where he thought she was because he could not see her. It was horrible. Only parents who have been in the Intensive Care Unit and have seen their child suffer can imagine our feelings.
The nurses were exceptional, responsive, and completely attended to Tommy’s needs. But most importantly, they involved us in the care of our child. We learned how to turn off the “beeping thing,” we got him juice, we fed him, we helped the nurses as much as possible. Being involved in Tommy’s care helped us cope with his condition.
There are many glorified careers in our country of opportunity: lawyers, governors, presidents, CEOs, but none can compare to nurses. They cleaned up after Tommy when he threw up, they changed his diaper, they always changed his IV carefully, and took his vitals so they would not cause him any discomfort. They moved quietly so they wouldn’t wake us up when we were resting. They made our stay as enjoyable as a hospital stay can be. They were consistently exceptional.
The nurses at Children’s Hospital always introduced themselves prior to their shift, always informed us who would be taking over on the next shift. It is unfortunate that although my wife and I remember their faces, their voices, their kind words and actions, we cannot remember their names. I would love to call out by name the nurses who cared for my son, they way I could name Dr. Sun and Sue Ditmeyer. I hope we were able to thank most of them at the time.
Tommy healed rapidly; it’s amazing how quickly children bounce back from surgery. Slowly but surely the swelling went down and we could see Tommy’s eyes. Then we saw a smile, a laugh, a “mommy,” a “daddy,” and seven days later, we were going home. Tommy had stitches around his head and it looked terrible, but he was himself, the 14- month-old we knew before the surgery, and more beautiful than ever. Today, Tommy is a big, healthy 3-year-old.
A sick child puts stress on a marriage. It can build a wall between a couple, or it can bring them closer together. My wife and I grew closer. We talked a lot, we hugged a lot, and we came together to love our child and to help him heal.
As trying as this experience was, the most beautiful scene I remember occurred on day three: there was Tommy, eyes swollen shut, in the arms of my wife who sat in a rocking chair, holding him like she did the day he was born. There was not expression of pain or sorrow on her face. Only the expression a mother can give her son, as if that was why she was put on this earth: to love this child, at this time, through this challenge. Tommy’s surgery would not be the last experience we would have at Children’s Hospital.
During the Christmas season of 2001, our 6-year old daughter, Claire, was diagnosed with having excess cerebrospinal fluid in her head. Once again, we found ourselves at Children’s with Dr. Sun and Sue Ditmeyer. Dr. Sun placed a shunt in Claire’s head to drain the excess fluid. He drilled a small hole in Claire’s scull and inserted a tube inside her head, down her neck, and around her stomach. He made an incision in her stomach so he could pull the tube completely down and position it so it could grow with her as she grew and matured. This time around we were upset, but relieved. We were concerned about Claire’s health, but we knew she was in excellent hands. Claire’s hospital stay was estimated at about 10 days; she was out in five. I credit her quick recovery to the excellent care Claire received from Children’s physicians and nurses. Claire is almost 8 now, and she’s completely healthy.
My wife and I agree: we never, ever want to return to Children’s Hospital. But, who knows what the future will bring, and should we need medical care again, no doubt Children’s Hospital is where we will go. I pass by Children’s Hospital & Research Center Oakland every day when riding on a BART train. Each time, the memories of our experience return, and each time I’m thankful to Children’s Hospital for Claire’s and Tommy’s good health.
Joe Murray and his family live in Antioch, Calif. He is an advertising supervisor at the San Francisco Chronicle.
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