The four-hour sleep-deprived eeg was over. There were no answers for us, but we managed to put concern on the back burner. Christmas was coming. My parents would be arriving later that day and I was planning a big Christmas Eve dinner. Fear and Worry were not invited to our celebration.
But sometimes, like an unwanted house guest that overstays its welcome, Fear and Worry show up anyway. They crashed my party on Christmas Eve, 2009.
M had seemed a bit off. I didn't give it much though...he'd had two seizures, two trips to the ER and a four-hour, sleep deprived eeg. No wonder he looked a little shredded.
I knew something was wrong when he had wet the bed.
I know it may not seem like much, but he'd been remarkably easy to toilet train. The entire process, from the first time he ever sat on a toilet to the point when we felt safe tossing all the diapers, was a period of six weeks. He was trained, day and night, before his fourth birthday. He'd never wet the bed. Until now.
I took his temperature: 99.6. Not alarming. I called the pediatrician anyhow and was instructed to bring M in . The pediatrician's first suggestion was to start with a urine sample. I took the plastic cup and M and headed to the bathroom. As he filled the cup, I knew we'd found our problem. M's urine was cloudy, almost milky. There was blood.
The urine was dipped.. It was positive for infection.
The day after Christmas we were sent back to The Mothership to see the urologist. If you have kidney disease and an infection like M had, you automatically move to the front of the line. No questions asked. His urine culture showed considerable bacteria growth. His white count was soaring, There was a raging infection. This is what likely induced the seizures.
The next few days were a whirlwind of appointments, tests and procedures.
There were countless blood tests. There were urine cultures.
There was a renal ultrasound to measure the size and shape of M's kidneys and to monitor the reflux that we already knew he had. M had plenty of these and he knew the worst part was the sticky gel that got all over your back and stomach and made your shirt stick to your skin.
The next test, a VCUG, was harder. For this test, M was to lay still on an x-ray table while a catheter was inserted into his bladder. Bottles of fluid would be attached to the catheter and drained, one at a time, into his bladder. As the fluid drained into M, the radiologist would watch the fluid on a computer monitor. I noticed the board in the corner with velcro straps. They told me if M could lay still, he would not have to be strapped down. I was instructed to lay my body across M as he was being catheterized to help keep him still.
The nurse assigned to M was so kind, so gentle. She gently stroked his hair and whispered to him, "It's okay, baby. I'm going to take good care of you."
To me, "My boy is named M too." She pulled a picture out of her pocket of a beautiful little boy with a mop of black hair and chocolate brown eyes. He had Down Syndrome.
She nodded knowingly to me and turned back to M, "M, I have to take this tube and put it in your pee-pee. It won't hurt you, but you have to lay very still. Can you do that for me?"
The nurse turned to me, "Does he understand?"
I looked at M and saw the large tears silently rolling down his cheeks.
"Yes. He does."
M was unbelievably cooperative. There was no need for him to be strapped to the board or for me to hold him down with my body. I simply held his hand and talked to him.
The room was quiet and dim as all eyes watched the fluid travel from M's bladder up into his kidneys.
The final test, an RNC, is done in the basement of the hospital. Radioactive dye is injected into M's bladder (via catheter, again.) and images are captured. This test requires total stillness in order to obtain clear images and young children are often sedated for this test.
Here is the tricky part:
It was determined that this test was necessary.
It was determined that sedation would be unsafe for M due to his respiratory history.
It was determined that general anesthesia would be used.
It was documented that M had three adverse reactions to anesthesia.
Your perfect catch-22.
For the test, M would have to be admitted for day surgery. As long as he could get out in 23 hours or less, insurance would not count it as a hospital admission.
M was prepped for anesthesia. I was allowed to carry him to the OR and hold him until he was asleep.
M had the test and was transferred to the special care recovery unit. Typical to M, he was unable to wake up from the anesthesia for several hours. His breathing was shallow and his oxygen levels dropped so he was kept on oxygen. When he awoke, he was transferred to the regular recovery unit. He would stay there until he could eat, drink and pee. It was 7pm and he hadn't eaten since the day before. He was hungry and ate graham crackers and apple juice. The anesthesia was still in his system and he promptly threw it all back up. An hour later we were allowed to leave. They gave me a small carton of apple juice and a vomit container for the ride home and wished M well.
The next day I would receive a phone call that would, once again, put our lives into a tailspin.