Brody, Bradyn. Bradyn, Brody.

I come from a very competitive family, starting from the age of 10 when, in response to something my mother whispered in his ear during a heated ping-pong exchange, my dad brushed off the paddle and said, “I don’t LET anyone win.” Thus began an epic decade long rivalry. I am my father’s daughter- when I set a goal, I plan on reaching it.

So I have a goal this weekend of getting Bradyn as close as possible to getting his service dog. Actually, my sub-goal is to actually get him to the full fundraising quota for his service dog, but I’m not prepared to make that the official goal since I don’t want to be devastated if we don’t quite get there. I take my goals super seriously, people.

As I mentioned yesterday, I’m joined in this by my official Bradyn Brigade of Dr. Crosby, Michelle Maskaly, and Dr. Finch. We are four corners of a lead box housing a laser pointing to our target. Yes. We are aiming to blow that goal away.

As the mom to two young children, one of whom was born one short month ahead of Bradyn, the story of his family just really hit home. His mom Elizabeth is the type of person that you can’t help but like- open, honest with the struggles as well as the triumphs, and madly in love with her little boy. (I think most of you know this by now, but if not: Bradyn’s family is working to raise $13,000 in order to get a seizure alert dog from 4 Paws For Abilities.)

I got to talk with her over the phone a couple of weeks ago to reassure her I wasn’t some creepy dude living in my mom’s basement (always a concern when the net is involved) and it solidified my resolve to help them even more. Without even having to ask, she answered the million dollar question: “We are totally dog people, by the way,” she said. I knew it.

Elizabeth has graciously shared her story with me and now with all of you. I dare you to read it and not want to set this goal on fire. Seriously. Double dog dare you.

Bradyn’s Journey

My perfect baby was born on July 14, 2006. He was beautiful and he was healthy. In fact he was healthy for his first year and most of his second.

In January of 2008 we were living in Arkansas but were at my mom’s house in Dallas for the holidays. The night before New Years he caught a puking bug and was oh so sick. All I really remember from that night was how little he was, we were sitting in a recliner and every 5 or 10 minutes he would reach his little hands out to grab the bowl I was holding so that he could vomit into it. I was kinda amazed that he was able to do that. It was one of those “do I have the smartest child in the universe” moments.

He got over that virus in a few days but then right on its heels caught something else that triggered high, high fevers. We were back home in Arkansas and Kyle and I had never dealt with a sick baby before so we couldn’t decide if we were over reacting or if taking him to the hospital was the right choice.

His pediatrician had instructed us to alternate Tylenol and Motrin and that kept the fever at bay during the day but as every parent knows fevers that are going to get crazy do so at 2 am. That way your only option is the hospital. When his fever hit 105 we bundled him up and took him to the hospital.

I will never forget the way we were treated at that first visit to the ER. The nurse in triage may as well have rolled her eyes at me. She explained with an air of disdain that babies run high fevers as she shot a syringe full of Motrin in his mouth. I was horrified. I had been giving him Tylenol and Motrin for days and was worried he was on the verge of liver or kidney failure and this crabby little woman had just dosed him without even asking what med he had last been given and when. In the end we were sent home sufficiently scolded and embarrassed.

The diagnosis was a virus and we were instructed to follow up with our pediatrician in the morning. We went to the pediatrician and were given the standard directions for virus: hydrate, manage the fever, rest.

This kicked off a cycle of high fevers, doctors visits, and agonizing over if THIS time it was bad enough for a trip to the ER or the weekend clinic. “Is he really that sick or is he going to rally at the last second and play with the toys in the doctors office and make us look like idiot rookie parents?” He did that a few times. He would be frighteningly lethargic at home and then we’d get him to the doctor and he would rally, handing out winning smiles and “hi’s” like a little politician.

I guess we kinda grew accustomed to sick Bradyn and just chalked it up to a bad winter, thinking spring would come, his immune system would kick in and all would be well. So the next time he got really sick on a Saturday we didn’t panic, we just waited until Monday, called the doctor and got worked in.

This time they were concerned by the sound of his breathing and ran some tests, turned out he had RSV which has the potential to be serious and causes labored breathing. This time we got the “GAWD you guys are idiots” look from the nurse but it was for not being appropriately quick with the seeking medical treatment. We really just couldn’t get it right.

They gave us the option of having him admitted to the hospital or taking him home and giving him round the clock breathing treatments. We opted for home, knowing that we could manage the treatments and that everyone is more comfortable at home including baby B. Kyle and Bradyn went home and I went back to work for the day.

Around 4pm that afternoon I was sitting at my desk wrapping up some e-mails when my cell phone rang, I saw that it was Kyle but let it go to voice mail thinking he would leave me a message and I would call him back as soon as I completed the task at hand. As soon as my cell stopped ringing my office line started, I glanced over and saw that it was Kyle again. It wasn’t typical for him to try that hard to get a hold of me so I knew something was wrong. I picked up the phone and said hello but Kyle wasn’t talking to me, I could hear him in the distance crying, begging Bradyn to stop and to breathe, all the while trying to explain what was going on to a 911 operator.

I screamed into the phone that I was on my way and jumped up. Before I even had time to figure out my plan, one of my coworkers came over, coat on, keys in hand and raced to her car with me. I will never forget how wonderful she was that day.

By the time we got to my house the ambulance was there, Bradyn and Kyle were both inside. Bradyn had stopped seizing but looked exhausted and his skin was the wrong color. Now that I have seen that look multiple times I know it was just exhaustion from the seizure. The period after a seizure is called “post-ictal” and is characterized by extreme lethargy. At the time, all I knew was that my baby’s skin was the wrong color and I was terrified.

Once we got to the hospital they checked him out, found nothing wrong. Decided that the seizure was brought on by a spiking fever, told us not to worry and sent us home with a “Rescue Med” to administer “just in case” it ever happened again but were assured it probably wouldn’t. Oh and “follow up with your pediatrician”. I requested that we be sent to a children’s hospital that would take the situation as seriously as I thought it should be taken but my request was respectfully declined.

and that was that. For then.

To be continued…..

Epilepsy – B’s road to diagnosis – part 2