The Saga of Sam

The Saga of Sam

You moved back to 8-West.  8-West is becoming an oasis in the middle of Hopkins.  You slept most of the morning.  Dr. Schwarz discussed the transplant with you.  You were interested in how long before you could eat after the transplant (a couple of days), how long would you have to wait (weeks to months), would you still take the penicillamine (transplant cures Wilson's Disease).  The adult transplant team stopped by to meet you.

You have always maintained a positive attitude.  Your strength has been remarkable, but this Saturday you are down.  I guess we are overwhelmed by events of the last month.

Sunday was a new day.  You are fighting the ascites.  Weekends in hospitals are lonely.  Most of the doctors are off.  Nothing happens, no tests for distraction, no staff coming in and out.  Dr. Susan Cumming visits.  Your weight is up to 115 lbs.  Anything over 110 has usually resulted in problems.  Thank God that Mom is a nurse.  She pushed for more Lasix and the house doctor responded.  Lots of visitors come - Granny, Jake, Uncle Jay, Aunt Peggy, Grandmom, Cheryl, Doug, Greggie and Danny.  We occupy a pretty large part of the cafeteria.  By evening, a small red blood vessel in your eye burst.  No one was real concerned, but I guess I'm unnerved.  The possibility of cerebral bleeding is on my mind.  On Monday, May 2, you are discharged and go home.

Things settle down a little.  You are struggling with the ascites control.  Your weight is hovering around 110 lbs.  Your belly is swollen.  You look a lot like you're pregnant - belly button protruding, veins visible.  You are not sleeping well.  Nausea and vomiting are common nightly occurrences.  On Wednesday, May 4th, you have a major nosebleed.  Your frustration is obvious as your blood goes everywhere.  The week reveals an uneasy calm.  We are all on edge.  The transplant we wished so much to avoid cannot come soon enough.

You have returned to your Mohawk haircut.  You wore it through fifth grade, but went back to a conventional haircut as you started Ridgely Middle School.  Our rule has always been that you control your own hair.  Now the Mohawk is back.  I think it is defiance.  You won't accept fate, you'll look it in the face and fight.  You are wearing "NO FEAR" shirts.  These tee shirts are popular now.  They say things like, "If you're not living on the edge, you're taking up too much space" and "Down by three, bases loaded, bottom of the 9th, fullcount, two outs ...NO FEAR".  Well, you are living on the edge and there is no fear.

By mid afternoon, 3:00 P.M., you are fighting a 103.8° fever.  Cool compresses and a bath return you temperature to 99°.  There is little concern with penicillamine reactions now.  You sleep well until 4:00 A.M., then awake with an upset stomach.  Mom and I are concerned, but you do not see the need to wake up Dr. Schwarz.  You have been amazingly accurate throughout the ordeal and we accept your judgment.  At 5:00 A.M., you have a bloody bowel movement.  I dress quickly, Mom calls Dr. Schwarz.  By now, you are vomiting blood again.  The calm is broken, we leave hurriedly for the ER.  Luckily, it is Saturday morning, no traffic on I-83 to fight.

We make it to Hopkins in record time.  Your self control is incredible.  I still hate Monument Street.  I'll pay to have it paved myself.  This GI bleed is much less traumatic.  The Blakemore is out, but unused.

We are old hats at the ER now.  Josie, our usual nurse, and Sharon Placek are excellent.  Josie has the best sour licorice.  Dr. Schwarz orders two units of FFP and you are admitted to 8-West.  We kid with Dr. Schwarz about our runs down I-83.  She really ought to pick us up.  I could drive, she could doctor, you could patient.  No policeman would dare give us a ticket and Dr. Schwarz wouldn't have to worry about parking.  We can just pull up onto the ambulance ramp.

The bleed stops quickly and I believe we are all relieved that the uneasy calm is over and we are back in Hopkins.  There is security to being on 8-West.  We have developed quite a rapport with the staff.  Dr. Cumming is in the Betsy (Mary Elizabeth Laverty) takes a special interest.  She attends Grace Fellowship Church with us and Chip Pierce, your youth leader, has told her to take care of you.  It's Saturday night and I am scrambling around to salvage Mother's Day for Mom.  I know it won't mean much in the hospital.

You are truly earning a nickname that will become more and more meaningful - The Miracle Man.  Sam - The Miracle Man - it has a ring to it!  We have Mother's Day cards for Dr. Schwarz and Mom, of course.  You have made a pottery dish for Dr. Schwarz.  It's one of the things you are doing at home to occupy time.  Dr. Schwarz really appreciates it.  Dr. Schwarz says you can go home.  I'm not ready for this.  I'm prepared to make the best of Mother's Day in the hospital, not at home.  Dr. Schwarz says we can even go out to dinner.

Well, Miracle Man, that's what we do.  We meet Uncle Stuart, Gayle, Justin, GramdMom (my Mom), Granny (Mon's Mom), and Jake at Piney Branch Country Club for dinner.  You dressed in a tie and silk shirt.  You are just happy to be there.  Any unknowing person would never suspect that you were the person in the group awaiting a liver transplant.  You look better than me.  You look better than Mom too!

You left the hospital that day with prescriptions for an antacid on top of the other medicine and a hospital bed.  The plan is to readmit you on Thursday, sclerotherapy on Friday, and home on Saturday.  Muscle cramps returned this evening.  They started in a hand and moved up the arm.  Quinine helped.

Dr. Schwarz had mentioned in conversation that her husband, Fritz, had just returned from the Middle East.  He brought back two belly dancing tapes as a joke for a friend.  Unfortunately, the tapes won't play.  I recognize that the problems is that these tapes are recorded in one of the unusual foreign formats and need to be translated to be useful.  We used to do this at Westinghouse, but restructuring has eliminated our capability.  Talking to our experts, I learn that a company in DC and Spicer Electronics in Woodlawn may be able to do it.  This has become an interesting diversion and a good chance to repay Dr. Schwarz in one small way.  The DC company wants $100 a tape.  I talk to Ed McCready at Spicer.  He feels it isn't worth it, but I'm pretty convincing and tell him of the Saga of Sam.  By the time we hang up, he has agreed to translate them for the price of the tapes.  When I pick them up, he does the job for free - Thanks Ed and Spicer Electronics.