On November 10, 2004, after being questioned about possible abuse, enduring several CAT scans and EEGs, Dr. Canales diagnosed Bryan with infant botulism. No, we hadn't fed him honey, but yes, construction was happening behind our house. The Texas Department of Health took a soil sample, and sure enough, botulism was present. Sydney & Bryce were old enough to fight the toxin, so they weren't in any danger. That day, Providence ordered Baby BIG, the anti-toxin for botulism, from California. The one dose of Baby BIG cost Providence about $45,000. It saved his life.
During our stay at Providence, Barry's mom, my mom, and Kari flew down to help with the kids. After Mary & Kari left, and a few weeks had passed, a generous couple from our home town bought my dad a plane ticket. Having family to help with the kids certainly eased our stress. We had no worries about what was happening at home. Barry's commanders made sure his place of duty was Providence so I didn't have to be alone. And military family, most of whom we'd never met, brought meals to us and raised money to help defray the cost of living in a hospital. That was in addition to the money friends and family back home sent. God took care of us, and we're still overwhelmed with gratitude for the kindnesses shown to us.
Bryan finally pooped (the sign he was in full recovery) on December 15. It was a really big poop. I had never been so happy to see such a mess! We left that afternoon, with much fanfare, and returned home to receive the home healthcare equipment we needed to take care of Bryan at home. Bryan started occupational and speech therapy with the therapists visiting us weekly.
In mid-January, Bryan pulled his NG (nasal-gastric, a.k.a. feeding tube) out. Dr. Tremper, the pulmonologist (and the only specialist TRICARE allowed us to continue to see), told me I could try feeding him without it. I started charting what he ate and when (per the speech therapist's recommendation), and we narrowly avoided a permanent tube. Instead, Bryan was prescribed some heavy-duty laxatives. Bryan was discharged from speech therapy and home occupational therapy in mid-February, and in April he started occupational therapy at Providence. On August 2, Dr. Noel, the gastro-intestinal specialist who flies in from Brooke AMC to Wm Beaumont AMC every month, discharged Bryan. He said, "He's a normal, healthy boy." Which meant no more laxatives!! Two days later, OT at Providence discharged him. Bryan was officially recovered!
Most people who see Bryan would never guess he'd been so sick. He's a typical 3-yr-old boy.
Since our experience with botulism, we've been contacted 4 times by the California Dept. of Health's Infant Botulism Treatment and Prevention Program regarding other families in our area dealing with the illness. We've helped one other military family in El Paso. Well, "helped" may not be the right word. But we did our best to encourage and educate them. Today, their little girl is perfectly healthy.
If you're reading this and you supported us in any way during this time, know we are still grateful. Bryan's life is a miracle--as all our kids' lives are. But without the prayers, support, and wisdom of our family, friends, doctors, and nurses, he might not be here today. How amazing that God's uses willing people to heal others. How thankful we are that Bryan is one of the healed.
Providence's hospital photographer took this photo of Bryan on November 12, 2004. It was one of the first official photos taken of him during his stay in the PICU.
This is just one of the many Bryan stunts we have to watch for. He wanted to eat naked and in peace, so he set up his dinner on Syd's dresser--then locked her bedroom door.
We visited the PICU to get some new photos of Bryan with his caregivers. Bryan had no problems going to Dr. Canales, but he wasn't about to cooperate with the paparazzi (a.k.a. Mommy & Miss Jeanne)!
Dr. Canales followed Bryan into Oceanville's waiting room and observed him for a few minutes. "Does he walk?" Dr. Canales asked. "Walk!" Jeanne exclaimed. "That boy runs!" (Oceanville is the regular peds wing, one floor up from the PICU. We had to do some traveling to find Dr. Canales!)
Dr. Canales picked up Bryan so we could get a picture with both their faces visible.
Claudia (one of Bryan's day nurses) and Maria (one of Bryan's night nurses) smiled while Jeanne held Bryan. Truth be told, though, Claudia wanted Bryan to herself!
Jeanne (behind Bryan's head) and Belen (the floor's nurse practitioner) tried to get Bryan to smile.
