William SpilkerIt was nearing Easter weekend in 1996 when we hosted an Easter egg hunt for the neighborhood children. William was 5 months old and had a bad ear infection. He had been fighting the ear infection for over a week, but I held him during the entire Easter egg hunt, as he cried and fussed the whole time. He did not really want to be held.
In the 5 days prior to April 3, 1996 six different healthcare professionals (3 doctors and 3 nurses) had examined William. He was quite upset, running a fever, and could not sleep. At one point, my wife took a diaper over to the pediatrician because she thought it had blood in it. They gave William a blood test but said it was normal, and sent us home, telling us to give him over the counter pain reliver to help reduce the pain and fever. My wife and I, and William's older brother had just been through a bad case of strep throat during the two weeks prior to April.
On Tuesday evening (April 2), we started William on yet another antibiotic to fight the ear infection, and we started to notice that William's eyes were crossing. I remember telling my wife, "this is just not right", but we had already been to the doctor's office almost every day for the past 5 days, and we were exhausted, and needed to get some sleep too. That night we had put William down in bed with us (as we had done for the last several nights). About 4:00am, my wife got up to change William's diaper. She put him in his crib, and went to wash her hands. When she came back, he was having a strong seizure, flailing his left leg and arm around in the air, with his eyes rolled up in his head. We called the pediatrician immediately, and told him we thought Will was having a reaction to the new drug. "I'll meet you in the emergency room" was his answer.
When I picked up William and ran to the car, he passed out. I did not want to strap him into a car seat in back, so I drove like a mad man to the hospital, holding him in my arm and shaking him slightly to get him to wake up and cry. Before I got to the hospital (about 15 minutes away), the Pediatrician had called ahead and ordered a lumbar puncture test, and a massive antibiotic "air strike"..."When it comes to Meningitis, it's better to shoot first and ask questions later". He was transferred to Riley Children's Hospital in Indianapolis, where he remained for nearly a month.
In the process of the Meningitis, William had had a stroke, and his right side was paralyzed. He was in intensive care for a week. They took a sample of the spinal fluid, and then tested it in the lab to see which type it was, and antibiotics would kill it easiest. Pneumococcal Meningitis that responded well to antibiotics was the result.
The Meningitis was defeated quickly, but then we began to learn of the long term effects of Meningitis. MRI's revealed "significant, wide spread brain damage". "What will be affected?" we asked over and over again. "We just don't know" was always the answer. Damage to a particular section of the brain could impair one's ability to play chess, or it could impair that same person's ability to swallow. It is very hard to know just what area controls what. As the brain heals from an assault, many functions are taken over by healthy tissue near the damaged area. The result is a "moving target", and doctors cannot tell you for certain what will really be affected by a brain injury. I was told by one doctor, "it is like taking a picture of William and studying it and then trying to tell you what he will do as an occupation when he grows up".
Around the middle of April, doctors began getting increasingly worried about the fluid buildup and pressure within William's brain. The condition of too much fluid in the brain is called Hydrocephalus, and William had surgery in late April to insert a shunt into his skull to drain excess fluid from the brain into his abdominal cavity. Meningitis commonly causes scaring to the layers of the meninges (the membrane between the brain and the skull) that naturally absorb excess spinal fluid, leading to Hydrocephalus. He will have this shunt for the rest of his life, and it will need to be replaced probably 3 or 4 times.
William was released from the hospital on April 26th, and was weak as a kitten when we brought him home. Like a newborn, he could not even hold his head upright, let alone sit upright. We began studying various alternatives for rehabilitation. During May and June, Will made slow but noticeable progress.
Around July 2, William began having very disturbing seizures. His eyes would bug out, as his hands and legs seemed to involuntarily lurch forward. He was given his 3rd EEG, and it was determined that he was having Infantile Spasms. This form of childhood epilepsy is particularly disturbing as many children who develop it have some form of moderate to severe mental retardation, and it also tends to be progressively degenerative. To add to the confusion and anxiety of that time, (the drug of choice for treating this condition) was very scarce, and could only be purchased through National Organization for Rare Disorders, who's offices were closed for the holiday weekend. Panic set in as we began to call everywhere we could think of to find the drug. Less than 24 hours later, we had the drug flown in and we began a daily round of shots that would last for the next 3 months.
The medication stopped the seizures almost immediately, and he has not had any since, however, they are a steroid that caused him to be in a "mental fog" for another 4 months. In addition to this, this medication is known to cause digestive problems, blood pressure problems, swelling ,acne, irritability, etc. The side affects were difficult to watch, but after completing the medication, we began to see our old Willy come back. He was hospitalized again for eating problems and dehydration in October of 1996, but has remained out of the hospital since.
William learned to "wacky walk" over Christmas holiday in 1997. He is still "non-verbal" but learning sign language, and the speach therapists say he will eventually get the talking part down.
Looking back on it, our journey has been more difficult than some, but a lot easier than others. It has been helpful to discuss our situation with others who also are sharing this road, and hopefully helpful to them as well.
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