The first time I met Catherine was 5 months ago, on February 12, and for about half an hour, she was the second most important person in my world. Catherine and her partner were the EMTs who responded to the 911 call I made at 7:30 that morning, when I awoke to my son having a seizure. Catherine drove the ambulance as I rode in the front with her, clad in pajamas, flip flops, and a wool trench coat. Catherine's partner had started an IV on Dane to give him valium to allow his body to relax out of the seizure. Dane never flinched when the IV was started. I remember that one moment being more terrifying that waking up to my son seizing in the bed next to me. What 4 year old doesn't respond when a strange man places him on a stretcher in the back of a strange vehicle and sticks him with a needle? This was not ok. Dane was not ok.
We all hoped it was a simple febrile seizure. While scary, febrile seizures rarely have any lasting effects. But as we answered the nurse's questions at the hospital, it became clear that Dane's was not a febrile seizure. He'd had a stomach bug the previous afternoon, but his fever wasn't high enough to have triggered a seizure and the seizure had lasted for much too long to be as simple as that. He was sent for a CT scan. We were sickened as we watched the nurse put a diaper on an unresponsive little boy, who somehow didn't look like our Dane at all.
We released a big breath when Dane's brain was given the all clear, but held the next one right back in as we were told his white count was 43,000 and his glucose was only 12. The nurse, thinking the glucose must have been a lab error, did a quick finger prick and saw that it was not an error: Dane's glucose read 10 this time. He ran out to get the doctor so that they could give Dane some medication to get his blood sugar back up. (Frame of reference: normal glucose range for a child is 80-100. Dane was well below the levels for shock)
Jonathan and I, being completely naive to the most basic medical knowledge, found this a relief. If his low blood sugar caused the seizure, then that seemed easy enough to correct; and he did have a stomach bug and threw up a few times the previous afternoon, so surely that explained the low glucose. But the nurse and the EMTs that came next to pick him to take him to the local children's hospital kept asking one another, "but why was his glucose in the tens?" Jonathan and I began to pick up that this wasn't going to be as easy as we'd like. As the nurse and transporting EMTs began to move Dane from his hospital bed in the ER to another stretcher on another ambulance, he started fighting. He fought the oxygen tube in his nose, he fought the straps across him in the stretcher, and he even with his eyes closed, he began angrily grunting at anyone who tried to place a mask back on his face. We were overjoyed at this small sign that things might just be ok.
Dane calmed down a little once he was on the way to the second hospital, but as we came to a stop and began unloading and nurses and doctors came poking and prodding and asking questions, it was clear that he was pissed. His speech was incredibly slurred, but he said "Mommy" when he saw me and began asking questions about where he was and if he could have some water. When a nurse instructed him to pee in the bed so that she could collect a urine sample, he looked at her like she'd lost her mind. I was still horrified at the possibilities, but considering earlier that day I'd had a hard time believing my son was ever going to say my name again, I clung to that small hope that he knew who I was and that his speech, while labored, was intact.
The three of us stayed at the hospital for 2 nights. Regulating his glucose was the biggest challenge even once he was eating and drinking. He had two IVs, a heart monitor, blood pressure cuff, temperature pad, and O2 monitors on him at all times. He had to get his finger pricked every hour at first and then every two hours. There were countless blood draws, a lumbar puncture (spinal tap), and most importantly, improvements by the hour. It took over a week for his speech to become completely clear again and his headaches from the seizures and lumbar puncture to ease, but we were on the road to answers. His problem was definitely an endocrine issue, we just had to figure out what exactly that was. The endocrinologist recognized that while lots of children are thin, Dane was not the size or height of a child relative to his parents. (We are not small people.) Dane had essentially failed all of the cortisol testing she had ordered and received from the first hospital he'd been taken to, and she felt that this was probably the cause of the seizure and his small size, but she had to be sure.
We went back to the hospital a few more times on an outpatient basis for confirmatory labs and a brain MRI on the order of Dane's new endocrinologist. Ten days after Dane's release from the hospital, his endocrinologist diagnosed him with adrenal insufficiency, in which the adrenal glands do not produce the stress hormone and natural steroid, cortisol. There is no cure, but treatment is highly effective. Cortisol is absolutely vital to life and regulates metabolism, glucose, blood pressure, heart rate, inflammatory response, and even memory formation.
There are a lot of causes for adrenal insufficiency. Perhaps fortunately, there is no identifiable reason for Dane's adrenal insufficiency. I'll be honest; it bothers me a lot that we don't have the answer. He's literally been testing for every single potential cause; but no matter what the cause is, the treatment is the same. For Dane to live, to be healthy, and to grow and thrive, we give him a steroid three times a day to replace the one his body doesn't make. His adrenal glands (that were barely functioning before) no longer work at all on their own so it's super important we don't miss a dose. Dane's dose also has to be adjusted if he gets sick or has physiologic stress. It's more of an art than a science, and we have to make a lot of after hours phone calls to his endocrinologist to be sure we're doing things the right way, but we're learning. The diagnosis is life changing, in good and bad ways, but we're changing too. And I have to constantly remind myself that having an answer isn't always the best outcome. The goal is a healthy child, and now we have that.
Dane is growing. For the first time in his life, he's actually having growth spurts! He's gained more weight since his seizure (almost 5 months ago) than he did in the previous THREE YEARS. He wears a medical alert bracelet so that if he is injured, EMTs will know he needs to receive additional steroids. Another confession: the bracelet used to bother me. I considered taking it off for the family pictures we had done this spring, but some sweet friends helped me realize that it's ok. It's a part of him. The bracelet will be in vacation photos, first day of Kindergarten photos, graduation photos, and wedding photos... it will be in every part of his life. Adrenal insufficiency will be a part of him forever. And that's ok. If I want to teach him to embrace the differences in others, doesn't it make sense that I'm shouldn't try to hide his differences?
I've wanted to write this post about a hundred times for a hundred reasons. I even started it a few times. People we know have asked about his bracelet, and we're trying to educate them as best we can. We're not hiding it, but it just seemed so frightening to put my family's most terrifying days out into the universe. Dane's seizure happened only three weeks after the twins were born. I wasn't ready to share in so many ways. And I'm still shaken by it all. I can't see an ambulance without having to talk myself out of a panic. I want to hug every EMT I see.
So when I ran into Catherine the EMT today at a restaurant, I was instantly teary-eyed. I remembered how kind she was to me, how she assured me her partner was "the best with kids." I stood there looking at her in Chick-fil-A and wished for the life of me I could remember this woman's name who I've thought about nearly every day for the past 5 months. So I asked her name. And I asked if she remember responding to call in February for a tiny boy having a seizure. She remembered instantly. She specifically remembered that his glucose had been 10 and said that she and her partner and the nurse she left us with had wondered what happened to the him all the time. Her first question was whether Dane had any brain damage from the seizure. I told her that he doesn't and that I rarely let myself think about what really could have happened that day and what a miracle it is that he didn't suffer any long term effects of the seizure.
But sometimes, on days when I really need to remember and feel grateful, incredible little things happen to remind me. So today, I hugged a stranger. (Don't worry, I asked first)
Photo credit: Melissa Dark @ Greener Grass Handmade
