As promised, here is another excerpt from Raising God's Rainbow Makers, my next book, which is currently in progress. Comments welcomed and adored! I prefer to get comments, especially negative ones, before publication. After publication is a bit late!
Dr. Underwood and I had met under difficult circumstances when we were living in Washington, D. C. during my stint of duty at the U. S. Department of State. I had made a Monday appointment at Georgetown University Hospital to which Donnie and I had decided to transfer Noelle’s care. On Saturday, in the middle of the night, while the records were in transit and her care in the process of being moved from one hospital to another, Noelle’s shunt malfunctioned. There was no question where to take her. Georgetown University was five minutes from our house; the other hospital was a 45-minute drive.
The young neurosurgeon on duty that night at Georgetown University Hospital went through the normal procedures to determine that the vomiting and pain was from the shunt and not from a stomach problem. “Tell me how many fingers you see,” he directed 11-year-old Noelle.
“Forget about your fingers,” said Noelle wanly. “I can’t breathe. Do something about that!” With those words, she stopped breathing.
The emergency room was suddenly alive with doctors and nurses, carts and paddles. We were quickly ushered to a waiting room. We would have preferred to stay in the emergency room, but these doctors and nurses did not know us and did not realize that we would not have been in the way and might even have been able to help. Realizing that arguing was going to waste precious time, we complied with the request to wait in the waiting room for the results of medical intervention.
Fortunately, we did not have to wait long. The paddles got Noelle breathing again. The resident informed us that he had called the doctor who would be the attending physician, Dr. Underwood, at this happy hour of 2:00 in the morning and got him out of bed. He would be in soon to install a new shunt portion.
Within just a few minutes, indeed, Dr. Underwood showed up. He told us that Noelle was in acute hydrocephalus (she had not become shunt-independent as many hydrocephalic children ultimately do) and that he would need to operate to repair the shunt. Since no records were available, he asked me to recite as much of Noelle’s medical records as I could remember. As it turned out, it would take three surgeries, each two weeks apart, to get Noelle’s hydrocephalus under control again. He replaced the brain portion of the shunt first, leaving the older tubing in the peritoneum since it was functioning fine. Then he had to replace the valve because I had forgotten to mention that she could not tolerate medium pressure, the default valve type used in cases where records are not available. Finally, it turned out that the peritoneal end of the shunt was not really functioning fine; it had become trapped in the peritoneal tissue and so the third revision in six weeks was undertaken.
Dr. Underwood and I came to know each other well during these weeks. In making rounds after the third revision, Dr. Underwood hesitated as he was leaving Noelle’s room, turned to me, and flabbergasted me with his words, “You know, when I put in the new valve, I looked at the lower portion of the shunt and decided not to replace it since it was working. I could kick myself now for not taking care of it all at the same time.”
How did he dare say that to a parent in these days of rampant lawsuits, I wondered. And especially to me! Did he know that I was the scourge of many clinics and hospitals because I questioned everything the doctors and hospitals did and made them re-think or took my children to different doctors when I thought they were wrong? Did he know that I was an outspoken advocate for my children? Was he not afraid of my reaction upon hearing these words of fallibility? Or did he know that I had great respect for honesty and integrity? Did he understand, intuitively, that I could handle any truth; it was the partial truths and manipulations that caused me to take out my lance and pierce one doctor after another?