There’s no stress in life like when something goes wrong with your kids. It’s heart-breaking. I don’t know how this works but when my heart breaks it also grows.
Our son, Greyson, was born just over a month before his due date, necessitating a week stay in the Neonatal Intensive Care Unit at Hoag Hospital in Newport Beach. Standard fare for a premie but initial blood tests came up positive for Galactosemia. Of all the luck. Galactosemia affects 1 in 60,000 births and was found in only 7 babies born in California in all of last year. More than just a food allergy, this disease causes a body to store undigested milk proteins in the liver and it can kill quickly. Before it was discovered, doctors chalked up infant deaths now attributed to these types of metabolic diseases to Sudden Infant Death Syndrome. It’s very treatable now that the medical community can diagnose it but it necessitates extreme, life-long dietary restrictions.
It amazes me that the State of California includes tests for such rare diseases but as one angelic doctor at CHOC told us, “If we catch one a year and save a baby’s life, it’s worth it.” It took a month of blood and DNA tests to confirm that he’s only a carrier, only possesses 1 recessive gene, not both that determine the full disease. So after all that, a month of NICU’s, tests, driving to different hospitals, meeting with the most compassionate, caring, and genius doctors I’ve ever met…he’s all good. If by chance as an adult he happens to have his own child with someone who is also a carrier then they’ll have a 1 in 4 chance of producing a child with the full-blown disease. Remember the fruit fly experiment in 9th grade Biology class?
After extensive DNA testing of Katie and I, it was confirmed that I’m the carrier that passed the gene to my son. Hospitals have only started to test for it along with other metabolic diseases recently (as in, not back when I was born) so it’s assumed that we’ve had the recessive gene in our family for who knows how long without knowing it. Sorry son, my bad. I’ll buy you an ice cream.
Today, my son had a febrile seizure in the parking lot of Costco in Mountain View. He developed a fever last night and we did the usual: ibuprofen, cool wash cloth, etc. He still had a slight fever this morning and we continued with the same treatment. Around noon, the fever broke and my wife took him to run errands. Febrile seizures happen when there is a sudden rise in body temperature, often taking an hour or more in adults, but can occur in children in less than 10 minutes. We think at the time of the seizure, his morning dose of ibuprofen must have worn off and the fever returned quickly.
He was in the shopping cart when the episode started and as Katie was heading back to the car she noticed listlessness and glassy eyes. She ran the cart back to the front door of Costco and yelled for help. At this point, Greyson seemed unconscious or very unaware of his surroundings. The Costco manager called 911 because Grey seemed to be not breathing. Apparently, as the ER doctor later informed us, immediately following a seizure it’s common to breathe only 3-5 times a minute for a few minutes, making it seem as if the victim has stopped breathing all together. The ambulance arrived quickly and they loaded Katie and Grey on board. The Costco manager took Katie’s keys, loaded all the groceries in the truck and reparked it next to the front door. We never got the guy’s name, his shift was over by the time we went to retrieve the truck, but what a saint. Give that guy a medal and promotion along with my undying appreciation.
I got the news via text message as I was getting out of the shower. If you’ve never received a text message that says, “We’re on our way to the ER,” let me tell you it gives new meaning to “pep in your step.” We’re new in town and had no idea where the nearest hospital was so the paramedic gave Katie the address, I popped it into Google Maps on the iPhone (I only mention this because growing up we used this…) and did my best Jensen Button impression on the 101. Also, by mistake Katie had my wallet and I noticed only half way to the hospital that the gas light was on in the car so I couldn’t stop for gas. I started calculating how far I would have to run if the car ran out of gas on the freeway. I texted and tweeted our prayer request to friends and family. Interesting note: my brother @adamtaylorbond and @prayer_network retweeted our prayer request to 4,500 people less than a minute after my original tweet. Who knows how many people threw up a quick one for Grey but all of a sudden we weren’t alone. Technology IS cool. The car held up and I ran into the ER. Crying baby. That’s my son.
His temperature at the time was 103.7 but he was alert and crying. The nurse said she would rather see a baby alert and crying with a 104 degree temperature than a listless, incoherent baby with a 101 degree temperature. Good news. They dosed him up with a fever-reducing cocktail, gave us the full run-down of febrile seizures, and waited to see if the cocktail worked. It did.
We were discharged 3 hours after intake. The doctors explained that it’s not necessarily the fever they’re worried about because a fever is simply a symptom of infection. If he continues to run a high fever for a few more days we’ll have to bring him back. He’s doing much better now and was even playing with his toys tonight like nothing happened, though he’s had so many drugs running through his system that he was stumbling around like a drunk little sailor. He’s sleeping soundly at the moment but we’ve been holding and hugging him relentlessly. It’s funny how we can go days just running through our schedules without fully appreciating the little life we hold in our hands. I love my son more than my own life but I rush around the home too much.
It’s been said that any fool can make a baby but it takes a father and/or mother to raise a child. Today, Grey made us laugh, cry, then laugh, then cry all over again. I guess that’s the life of raising children. I pray for my son’s safety, health, development, his spiritual life, and relationships and do my best to trust God for his life but my own sense of control is an illusion. There will be many more times when things go wrong. We can only do the absolute best we can to protect and raise our kids and then do the absolute best we can when things go wrong. As a wise and good friend of mine once said, “Our kids don’t give us grey hair because they drive us crazy. They give us grey hair because they break our hearts.” And somehow when my heart breaks, it grows.
Thanks for reading. This is my therapy.
matt in menlo 
