The Saga of SamMonday, March 21, 1994
Mom took you to Dr. Josephs. I felt that he would diagnose some sort of infection, prescribe antibiotics and WE would be back to normal. After examination, Dr. Josephs was also concerned. He felt that he could diagnose this problem, but recognized the implications of such symptoms. He told us that if you were his grandson, he would take you immediately to the Johns Hopkins Emergency Room.
Aside from the keen observations and good judgment of Mom throughout this crisis, you will see numerous other actions and decisions that were crucial to the successful outcome. This was the first. Dr. Josephs did not delay the necessary EXTREME medical care. I've come to recognize that this was God's hand working his will in our lives.
Mom called me at work and we met at the Pediatric Emergency Room around 2:00 in the afternoon. This began a laborious sequence of examinations and tests. It was our first exposure to an ER - we would become quite familiar. You had several sets of x-rays, a sonogram and blood tests. Many doctors examined you. You were cooperative and positive, even humorous as many poked and prodded you. Mom or Mom's work, probably both, contacted Dr. Jay Perman.
Dr. Perman is the head of Hopkins Pediatric Gastroenterology Division. He also directs the Hopkins Home Care Pediatric Service, hence the connection to Mom. His son, Chad, has played on your soccer team and in the same baseball league with you for several years. I've known his Mom, Andrea, from sports, but only knew Dr. Perman casually. Once, Dr. Perman visited the ER, things began to take a direction.
I knew something was wrong from the results of the sonogram. The sonographer really did not like the appearance of your liver. After the initial session, she asked that you be returned for more analysis. While she said nothing concrete, her actions and remarks showed real concern. It was my first indication that something other than infection may be involved. We returned to the ER, then went for more x-rays. It is after dinnertime now and we know little more than we did this morning.
Dr. Perman had told us that the best thing he could do in this situation was to be our friend and coach. He assigned Dr. Kathleen Schwarz (that's right - no "T"), a liver specialist to you. Dr. Perman made a big difference that day. He brought some order and control to a day that seemed largely chaotic. The flow of doctors in and out slowed and we waited for Dr. Schwarz.
Dr. Schwarz was well worth the wait. I cannot imagine going through the next months without her. If Dr. Perman did nothing else in this case other than introduce us to Dr. Schwarz, I would feel a life long debt to him. I truly believe he played a larger role in the background, but I know that he certainly lived up to his promise of being a good friend and coach. Both Jay and Andrea visited frequently and supportively encouraged us all.
Dr. Schwarz was convinced from first sight that this was a serious liver disease. She noticed a small red spot near you temple that was a sign. These red spots are 'spiders' and more appeared over the next few weeks. They start like pimples but then spread out like 'spider webs'. She spoke of your hard liver and enlarged spleen and told us you would be admitted tonight. She listed the things that were on her list of possible causes. These included various forms of hepatitis, auto-immune diseases, and finally at the end of a list of about ten things was Wilson's disease. She took the time to explain each and dwelled on auto-immune diseases considerably. She told of treatments with steroids and how one young man recently returned to playing lacrosse.
Well, it was quite a day. At 8:00 A.M., I was thinking infection, by 8:00 P.M., we were talking auto-immune diseases, steroids, transplants and worse outcomes. Just after 11:00 P.M., we arrived at your room on the 8th floor of the Children's Center, exhausted, worried, scared and uncertain. Mom spent the night with you.
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