I guess we should just get into Bradley, because there is always a lot to talk about with him. Sometimes, the hits come so hard and so fast that I need some time to get through it all and there is so much that there are gaps in coverage.
As some of you know, Bradley had his first seizure in 2013. It was Grand Mal, and he stopped breathing. I’ve talked about the trauma of that day, but after it was all said and done, it took another seizure before he was put on meds. Fast forward over the years into 2018 when Bradley stopped sleeping at night. All the intermittent seizures he would have at night seemed to be catching up. By 2020, I was zombie mom…by 2021 I was missing important stuff for the girls and Eric. By 2021, I knew that Bradley was truly having night time seizures and that I wasn’t seeing behaviors. If he didn’t seize, he was having seizure spikes. At the time, that was just explained to me as activity all night long, no wonder he was exhausted, all the time.
August 26, 2023. Our world changed again. Eric called out from the bathroom and we were completely unprepared for Bradley having a Grand Mal seizure. Ten years apart, but one all the same. The seizure rescue med was mostly ineffective, we didn’t know it would take some time to work…it did - but seeing your kid seize - well, that lasts your lifetime, his lifetime and that of someone not yet born. We would also quickly learn that rescue squads were really not prepared to do anything for seizures once the initial rescue med was given. Worse, the ER was a complete waste of time. The on-call Neurologist wasn’t much better either, his comment to me was: “people with Epilepsy just have the occasional seizure.” While that was mildly reassuring, it was still rattling to see your baby have another Grand Mal seizure.
That week, he would have two more: a grand Mal seizures, a petite Mal seizure, and a few Absent seizures. The second Grand Mal would bring a dosage of an incredibly powerful and exhausting anti-seizure medication and while he was trying to find his way through that one, he was slowly climbing dosage into his everyday dose on a medication that took months to do. The slow climbing dosage a result of the consequences that he could have had very serious skin issues if we didn’t. By December, Bradley had reached the dose he would maintain, and had gotten a cold that mimicked, but was not pneumonia, dodging another bullet so to speak in the world of Bradley’s health.
There was enough tragedy in 2024 that it was a Blessing that Bradley’s health stabilized for the most part. Looking back now a I realize that he was likely seizing quite a bit at night, or at least the seizure spikes were really ramping up. During the day he was exhausted and his behaviors were quickly deteriorating so that the end of his 8th grade year was such a challenge that by summer, not fighting to get to school everyday was a relief. October into November found more seizures and more meds, heavier meds. And it truly was the worst year, and as close as we were to ending the year - life was not done challenging us. Bradley would get hit with a reflux/choking episode that would bring a fever, cough and an aspiration pneumonia diagnosis. Two strong antibiotics he’d never had later, he was showing no signs of being sick two days later. But we continued the meds as instructed to be safe - but now his seizures were coming closer and closer together, and always just a bit longer. Ten days before Christmas he started clustering and his rescue med was taking almost an hour to calm things down. Thinking he was okay, I took him to school to keep his routine, he did okay there but as I walked up to get him after school, I saw the next seizure hit as he stepped off the curb, I rushed to grab him and eased him safely to the ground. When Eric got him he sat with Bradley as he clustered, one after another, every 2-3 minutes like timing contractions, hideous. While he and Sydney timed, I was making the on-call Neuro at UCLA my new best friend.
By three Tuesday morning we were on the way to UCLA, at the ER, the team knew his name and I could hear them asking each other “Is that Bradley?” as we worked through triage slowly to allow Eric time to figure out parking. They had an ER room ready for Bradley, two nurses pulling blood gases, Neuro tech on hand for an EEG setup, night shift transferring off and day shift transferring in, all working to get Bradley in, settled and testing quickly in place. From there to the PICU, we would spend one night in a glass box with no bathroom, no food allowed and one pull out bed that Eric and I would swap out from, with one little boy so full of meds he couldn’t keep his eyes open.
Here is where Eric and I would watch in horror as our child would become unresponsive. Bradley woke enough to move around a bit, but when he got sleepy he folded over his legs, head down on the bed past his lap. I gave him a few minutes to make sure he was indeed back to sleep, and by a few, no more than five. When I eased him back up to lay him back, immediately I knew something was wrong, he had refluxed and vomitted a sizable amount of bright yellow stomach contents (meds - there had been no food for hours). Though his oxygen stayed in safe zones, his heart rate did not, dropping quickly sending alarms through the PICU. First nurse, get the doc to the second nurse, then a doc and then another - working the problem and trying to get Bradley to respond.
It wasn’t long; it truly wasn’t, but you know - a lifetime in a moment. We stood at the end of his bed in shock and disbelief, was this truly happening to our boy? Was something that had been quietly on the back burner of his life suddenly going to be the thing that takes him. It’s like standing in a room with every diagnosis he has staring you down and the ones that threatened him as a baby and still stand directly in front of you suddenly stepped aside and here was Epilepsy sneaking in behind them, suddenly full grown and dangerous acknowledging that yes, he could rob us of Bradley faster than anything else if it wanted to.
He finally opened his eyes and we were able to take a breath, get to him and try to pretend that he hadn’t just shaved years from our lives. Purposefully pushing the fear away so he would have no idea and no reason to be more scared than he already was. After this episode, we moved to DOU (Direct Observation Unit) where his doctor was fierce and ran the floor with precision and care, and three NPs that were efficient and kind - one had the gentle and compassionate spirit that was so thoughtful, she came prepared with an ultrasound machine in order to place a difficult IV herself because he had already blown four. The Floor Doc kept the teams moving that needed to be going in and out of his room. And when I say teams I mean groups of five or more from: Neuro, Cardio, Anesthesia, Infectious Disease, on top of the incredible crew at MRI that cared for him like he was the most important patient they had ever been given.
For the first time, we knew that Bradley was very aware of his seizures and they terrified him. He clung to us, his sister, Scooby and his new friend Pig. The boy who never took to stuffies, hung onto Pig and gave lots of sloppy kisses and big hugs. Somehow, we managed to get him home two days before Christmas, it was a miracle in all ways.
Since then, we’ve had time for him to adjust to his meds so they don’t knock him out as much. In April, we did some testing in a controlled setting, another five days in the hospital, yes - we took Pig. We had to reduce meds in order to get his seizures to start and then adjust them to get them to stop again. While that is no easy task on either end, at least we know he needs the meds because without them he seizes, and with them he doesn’t. Anyway, we saw one small seizure the first day home; since then, quiet and stable. (mom knocks on her own head as it is harder than wood).
Bradley was happy to end the school year and so excited to start 10th grade. He is surrounded by the best people that help him grow and blossom at school and keep him safe. His meds are manageable and for now he is stable. He is happy and his personality is exploding. All these signs tell us that likely we aren’t missing seizures while he sleeps and that there zero to minimal spikes as well. It’s like finding an oasis in the desert, we have no idea how long this stability will last, but we are living in this moment and giving him all the best experiences, nurturing all the relationships we can… storing the beauty of today to always have it to bolster us during the crazy uncertainty that is his life and his future. From former therapists, current paras and teachers, friends attached to the girls and Madison’s church, most recently adding the Miracle League - all together, we are building a community around Bradley of a group of people that love him and have eyes on him when we can’t. They help keep him safe while pushing him to experience the parts of life that he’s missed while trying to get his health to calm down and let him live to his fullest. He’s doing that right now, right before our eyes, and it’s beautiful!
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