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Sam's story continues
We settled in with Sam at home and were so glad just to get to keep him. Everything was going well until around noon on August 5th. On that day Sam suffered his first seizure and was rushed to the ER. A CT scan and then later an MRI showed a golf ball sized cyst in the left temporal lobe.
Surgery was required to address this problem, but to his credit, the pediatric neurologist believed that it would be best if a more skilled surgeon took the case. It was recommended that we go to Shands Childrens Hospital in Gainesville, about 2 hours away and be put under the care of Dr. John Parker Mickle. Dr. Mickle, a truly wonderful human being as well as a gifted surgeon, along with his intern, Dr. Ellis they took very good care of us. They explained exactly what would be done in the operation and answered all of our questions.
Sam at Shands Hospital the day before brain surgery
The surgery on August 12, 1997 took about 2-3 hours and we were informed by Dr. Mickle that while he expected "a mess", what he actually found when he opened Sam's skull, was straightforward: It appeared that fungus from the February infection had made it to the brain. While the treatment killed the fungus, it left scarring and had blocked a ventricle which caused Cerebral Spinal Fluid (CSF)to back up and formed the cyst. Dr. Mickle removed the cyst and opened the ventricle, hoping that a shunt would not be needed.
Sam After Brain Surgery August 12 1997
Sam awake and eating the day after surgery
Sam recovering and bandages off on August 17
Sam continued to have seizures after the surgery and it was decided that the CSF was not draining as it should. To remedy this problem the doctors recommended the installation of a shunt. This is a small one-way valve that allows the CSF to drain off through a tube that leads either to the abdomen or the heart to be absorbed by the body. Since Sam had an ileostomy the ventriculoatrial (VA) shunt was the only option. The drawback to this type is that the length of tubing from the pump to the heart has to be adjusted as the patient grows. This would mean surgery every two years until adulthood.
The surgery was performed on August 22nd. The shunt installation was a complete success and Sam was kept on Phenobarbatol to control his seizures allowed to come home again.
Sam after shunt installation.
The earlier scar still visible.
We brought Sam home on September 2nd still fearful of the possibility of seizures. Our worst fears occured just three nights later when he seized and turned blue. We rushed him to the ER and he was admitted to the peidiatric intensive care unit (PICU) for observation. We spent a couple of nights there and were released. We travelled again to Shands September 15th for a check-up with the surgeons. We needed a blood lab to check his med levels and while waiting for that at Shands, Sam had another seizure. We were moved to the ER and met with the Neurologist, Dr. Maria. He recommended putting Sam on Tegretol, a better anticonvulsant than Phenobarb. We were admitted to the Intermediate Intensive Care Unit for another two weeks while the doctors made sure we could control Sam's seizures with the medication. We finally came home September 30th with portable oxygen and pulse oximeter which monitors the amount of O2 in the blood. Since Sam's seizures restricted his breathing we were able to detect and act on seizures that might occur while he was sleeping etc.
Back home and recovering - before more surgery October 97
 
We had scheduled August 11th for the surgery to reverse Sam's Ileostomy. We were looking forward to having his bowels function as designed and getting rid of the ostomy bag. Well, his brain surgery kind of took that date away from us. We rescheduled the surgery for October 15th, 1997. Dr. Crooms, who performed the original surgery also did this reversal. Sam managed to keep from having seizures until after the surgery. Ginny and I celebrated not only Sam's reconnection, but our birthdays (mine on the 17th and Ginny's on the 18th) in the hospital with Sam. The surgery was a complete success and soon we had the first poops! It was very exciting!
Since February of 1997, I had been posting updates of Sam's progress on my website. In the beginning to explain to my customers why their orders had been delayed. But I was very pleased and surprised in the real interest people took in how Sam was doing. One of my customers, Buddy Nelson, was the Public Affairs Officer for the Lunar Prospector project to investigate the moon. When he brought Sam's story to the attention to the Principle Investigator, Dr. Alan Binder (who I had once met when I worked at JPL 21 years earlier) he was impressed with Sam's ability to survive adversity and was also interested in Sam's middle name: Tycho. I received a letter from Dr Binder wishing Sam well and explaining that since his spacecraft would be making many passes over the crater Tycho on the Moon, he felt they could use a good luck charm in the person of Sam. So he made Sam an honorary Lunar Prospector Team Member and sent along a plaque. We were also invited to the launch of the spacecraft (as the guests of our son) in January of 1998.
Sam with his Lunar Prospector Plaque
November, 1997
Sam continued to have seizures througout the end of October and the beginning of November. Most of these were short in duration and we were able to deal with them at home. November 17 Sam had a particularly deep seizure and his blood O2 dropped to 27, but he came out of it and revived competely in a few minutes. It turned out to be the last seizure for a while. We were able to get to the business of watching Sam grow and develop. He was weened off of the Phenobarb starting in late December. This brightened him up quite a bit and he finally started to roll over on his own by February.
What a long year 1997 was for our family. Seven operations in nine months is a lot for anyone, but a heck of a way to spend your first year. 1998 would hold many joys - including the birth of Sam's brother. To continue the story CLICK HERE
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