Joy had to undergo surgery once again on Friday, September 27th. It was discovered through tests conducted in the preceding weeks that her shunt was not performing up to par and that her ventricles had become slightly enlarged from a build-up of spinal fluid as a result. In fact it was determined that the shunt was not working at all, which in a sense was good news because it suggested that as the shunt gradually shut down from blockage that Joy was processing some of her spinal fluid on her own and transferring it to her abdomen where it is supposed to go.
We've become veterans of surgical procedures and yet it's always nerve-wracking. Joy handled it with her customary ease and grace. I was a little more emotional since it brought back some of the bad memories of the early days of this ordeal, but the fact that Dr. Sanchez was again in charge of the procedure put my mind at ease. He was not sure what he would find and his initial explanation was along the lines of a worst-case scenario, namely that if the tube coming out of the interior of Joy's brain was blocked, he would be drilling through her skull plate and installing another tube in the top of her head. This was more complicated than I had anticipated, but I trust Dr. Sanchez and know he will always do the right thing.
A shunt is a pump apparatus that is installed behind the ear. A tube connected to it runs from the valve to the interior of the brain. Another tube runs from the valve down through the body to the abdomen and transfers the spinal fluid there from the brain. Some of Joy's early problems in the first months of 2011 were due to the inability of her doctors at Loma Linda to install a shunt that performed properly. They installed two shunts at different times, neither of which worked. My personal opinion is that they rushed the process, that they should have been aggressively removing the fluid that was building up in her ventricles by whatever means necessary, but they failed to do that. When we got her to Scripps Green in the care of Dr. Sanchez, a drip line was inserted that removed the fluid that had built up in her ventricles and was exerting pressure against the inside walls of her brain. It was a gradual process. After three weeks, once Dr. Sanchez determined that her ventricles had returned to normal size, he installed a new shunt. That shunt worked well for a year and probably longer. But over the past year, those of us who care for Joy noticed that her general condition seemed to be declining slightly. She slept more and was not trying to communicate as much. Walking and retaining her balance seemed a little more difficult for her. The changes were barely noticeable, but we all agreed they had occurred.
The surgery went well. Dr. Sanchez discovered that only the valve had clogged and did not therefore have to replace the tube to the inside of her brain. He replaced the valve in the shunt with a new and improved version that was not available in February of 2011 when he installed the last one. It is apparently easier to adjust the flow rate on this new device. He also opened up a small hole in her abdomen to check the other end of that tube. Everything is now working the way it is supposed to. This was the fourth shunt installation or replacement that Joy has undergone and we hope it will be the last.
She came home Saturday afternoon after spending the night in the hospital. She has several staples in the skin behind the ear and a few more in her stomach. She was smiling all day Saturday, but today, Sunday, we could tell she's having some discomfort. She will visit the doctor later in the week to have the incisions examined and have a CT scan to see if her ventricles have shrunk any.
We hope the new shunt will result in improvement in both her physical and cognitive abilities.
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Joy had a birthday on August 13th. She and nurse Natalie and I went out to dinner at a huge sushi restaurant named Shogun and Joy, who loves sushi, ate like a horse:
Then we came back to the house and celebrated with Sister Susan and Paul. Susan baked the world's largest cupcake and Joy was delighted by it. She couldn't stop smiling:
In June, we had a visit from our friends Gary and Lynn Jensen Nagle who we visited at their vacation home in Costa Rica in 2007. It's always good to see them. I've known Gary since high school and Lynn since she met Gary in college. They have kept in touch and have been very supportive during the most difficult times. Joy's friends from work, Cyndy Smith and Georgia Schweitzer, also visited shortly after Joy's birthday. They have been regular visitors and fill the house with laughter when they come. We appreciate any and all visitors, so if any of you are in the area, give us a call and stop by.
Love to you all,
Joy and Doug