Dave posted his version of this story (in a wonderfully succinct yet emotional way), so I can luckily edit mine back a bit…ha, right. There are parts that I just don’t want to forget; there are others I forgot the moment they happened that he probably included. Here’s my version, mostly so that I can look back in a week, a month, years, and remind myself of our luck and happiness.
I completely jinxed myself. In a major way. First, I was mentally celebrating Hadley’s 14-month “birthday” (even posting it on Facebook, which is big for me lately), joking that Friday the 13th isn’t unlucky since he was born on the superstitious day — and what a joy he’s been since. Plus, the prior Wednesday, I wrote that I’d try to write some lighter blog posts, and Friday I followed through. Then, in a very real way, all hell broke loose.
We awoke on Friday to find that Hadley had a low-grade temperature. He was relatively normal, but still tired (since I often get him up at 6:45 to rush off with Daddy by 7am), but a) it was too late for me to call in to work (and my schedule this year has yet to be re-printed, so it would’ve been tough to provide sub plans, even emergency ones), b) he was going to have a day alone with his grandma, so he was going to have one-on-one care, and c) it could’ve been teething for all we knew, although his little cousin had had what seemed to be a virus earlier in the week which consisted of about a day or two of sluggishness and fever that safely ran its course. All signs pointed to being safe to head to work.
Since Dave was going to be promoting his online comic series at a local convention all weekend, I headed off to Utica to pick the little man up after work. I had received a few updates throughout the day, and was asked if he should have some more Tylenol before I picked him up. I wish I had answered sooner rather than finally getting to the text and saying he could wait until I got there. We can’t say that would’ve helped the situation or not, though, but regardless…hindsight is painful.
Something felt wrong as I drove. I couldn’t put my finger on it. Was it the high-stress workweek I had just completed? Was it a change in the weather? My nerves were up, and I must admit they haven’t totally let up yet.
When I arrived, I found a concerned grandmother holding the little man, clearly sluggish and seemingly watching TV. She mentioned that he had been shivering, but had recently had a strange shake, and that we might want to take him to urgent care that evening. Then things took a sudden downward spiral.
We gave him some children’s Tylenol (a natural version) but I noticed that he wasn’t sucking on the syringe the way he usually does. In fact, he was hardly moving, and he hadn’t responded to me once (very, very rare for suddenly having a parent arrive). We both agreed I should call his pediatrician. After running to the car to get my phone and finally calling, they agreed that we should take him to the hospital. During that time, he grew worse, clearly in the middle of a seizure.
Donna drove my car while my tremoring voice constantly assured my now vomiting little baby that everything would be alright. I was breathless. He wasn’t acting violently in his carseat; the Tylenol and what appeared to be drool and bile oozed from his mouth, his eyes glassed over and almost closed, his body both stiff and limp simultaneously. The hospital, only a handful of blocks from my mother-in-law’s home, showed itself before us and I ran in what felt like slow motion into the ER (nearly knocking over a man pushing a walker), hardly stopping to talk to the staff. Thinking back, I felt he was already brain dead in the car. I felt we were losing him. That fear still hasn’t left my gut, although he’s with us, able to eat, to play, to move again.
The ER staff was absolutely incredible, the best medical technicians I have ever seen in my life. They insisted that things would be fine, and while I trusted them, I didn’t believe them. Normally, I trust medical personnel (whether I should or not) and put my faith in their hands, but their actions and tones of voice indicated that they were highly concerned. I didn’t leave his side, feeling as if I had absolutely zero control over what was happening…and I didn’t. None of us did.
His fever hadn’t gotten that high, maybe 103 at the most. Babies can hit 105 or so commonly (although it’s not a good thing), but I was later reminded that we have a few family members who naturally run a low temp, so there’s a chance that the 102-point-whatever that he reached might have been his “high”.
About 45 minutes to an hour after arriving, which felt more like 10 minutes, he started seizing again, his eyes rolling and his body shaking, which concerned the (AWESOME!!!!!) doctor since his temperature at that point was below 100. We later figured that he had simply spiked too much, but he was honest with us that it was rare for a child with “no fever” (practically no fever, at least) to seize, so this was the point that his father and I had to decide how much testing we needed to do. (Dave had come straight to the hospital, as did his father.) His brain might have damage. It could be meningitis. It could be something else we were completely unaware of.
I wanted to sing to him more than anything on Earth, to talk to him with a calm demeanor but my body wouldn’t allow me to. I whispered in his ear and kissed his face, but I’m not sure anything I said made sense. I was in shock. I was starving, I wanted to go to the bathroom, but I couldn’t move from Trauma 2. At times, I held him, my limp little doll, receiving no indication that he knew I had him. For the first time, there was nothing my mother’s love could do to fix the situation. I ached from the numbness. I would have rather died in that moment than to see him lost.
We made a fast decision to do a spinal tap to determine if it was meningitis. I looked into the doctor’s eyes, which were anxious but kind, and I nervously told him that I trusted him. We shared an unspoken awareness and respect in that moment. Hadley was stable (albeit still unresponsive), so we were taken to a quiet room while they did the procedure, picking my sister up at the door along the way. She later told me that she wanted to throw up or pass out when she saw the looks on our faces; we all looked like we had already lost him, apparently. I think we all were in serious shock.
After 15 years…minutes…we were led back and I held him, his pale body in nothing but a diaper with oxygen and IV tubes wrapping us up together. I rocked him subconsciously as the doctor said that it seemed we were clear for meningitis. It was discussed that if the seizures continued or they couldn’t determine cause that we would be heading to Syracuse (the best place in the area for a sick child, but dauntingly terrifying for us to be an hour from home…there are worse things, though, and I was glad they were willing to hand his case over if need be), during which a family tiff arose over whether we’d use an ambulance or helicopter. The doctor, Dave and I agreed that an ambulance would be safest and simplest (not to mention cheapest) and I had to silently but stalwartly put my foot down; we’re the parents, we make the decisions. Luckily, everyone understood; besides, I said, it might not even come to that. Part of me wished we could be alone with our son; another part of me was happy to be surrounded by support.
The next decision was whether or not to expose the little guy’s brain to the radiation of a CAT scan to determine whether there was any brain damage. The irony of all the little choices we make to make our little boy as healthy as we can, every organic cheese stick or homemade whole wheat muffin, hit me hard. One in 5,000 chance of developing a tumor; not a huge risk, but not a small one. After some conversation amongst the family (my mother had also arrived, thank God, looking just as hopeless as I felt), though, and lots of mental flip-flops, I had already decided. For the most part, I had been quiet. Shock, fear, and hopelessness will do that. But, I needed to know for the future if every twitch or strange behavior (which may or may not be a normal reaction of a young child) was actually due to a seizure he had when he was 14 months. I had to know.
I held him on a gurney as Dave and I were ushered to radiation. Along the way, we passed a sweet family with an infant and a child just older than Hadley. I couldn’t help but look at them with tear-filled eyes and a half-smile, silently telling them to hug their kids a little tighter at bedtime, then hang my head. Watching his little body lie in that huge machine as his perfect little brain appeared piece-by-piece in a blue image on a screen, I immediately knew he was okay. I was starting to feel more hopeful, but still couldn’t breathe.
The anti-seizure medication wore off as time went on, and while he wasn’t smiling or normal in the slightest, seeing his droopy eyes start to work again was encouraging. Still, I couldn’t breathe fully, or think much, or allow myself to let my guard down. I figure it’s probably how a mama out in the wilderness feels after a close-call attack from a predator; it’s a relief, but they must still be on high-alert…constantly.
Dave’s parents arrived with mountains of food for us, my mother had arrived at some point, and the nurses said that we could try some apple juice with the baby since he needed fluids (although he also had the IV); we later found out that the small pouch of food and fluids he downed was a no-no since there was a higher chance of asphyxiation during the night if he had another seizure or anymore vomiting. Dave decided to take his car home with his dad (to have a ride back) and to grab necessities for us and feed the cats. As my sister, and later my mother left, I could see that they were still concerned. We clearly weren’t out of the woods and the night ahead was sure to be difficult.
Still on a gurney, the baby and I, along with Donna (my partner in tragedy, at this point) were brought to Room 357, which housed a cage-like bed for Hadley and a smaller-than-a-twin hospital bed which Dave and I ended up sharing for the night. I don’t remember whether I held the baby after settling in or if he went into his “cage” (exhausted and still under the effects of medication), but I chatted with Donna until Dave came, starting to feel as if everything might just be okay. My heart was still in my throat that the night could prove terrifying.
The baby received a regimen of painkillers/fever reducers throughout the night. The rest is a blur — about 2 hours of sleep for each parent, some fussiness but general exhaustion from the baby, a rebellious breastfeeding at 3am (I know his hungry cries (obviously), and I also knew I wasn’t going to be sleeping the rest of the night so if there were issues with seizing and choking, I’d catch it immediately), lots of IV bag changing, chest listening and hiney temp checks (which was getting sorer and sorer since a bout with diarrhea had started). The more aware he became, the more pulling-out of his nasal oxygen tube he did, clearly frustrated, himself. His temperature was still fluctuating, but not higher than 102 (generally between upper 99s and 101s.
When morning broke, his oxygen was checked and deemed fine; only the IV left to go. It was also decided to try some food, of which he ate an entire pancake, yogurt (ugh, with corn syrup), at least 1/2 a banana, some juice and milk. Kinda usual for him. He still didn’t look at all like himself, but his energy grew and he became fidgety without being able to toddle around or play much.
A doctor finally came and Hadley’s mood was pretty cheery by this point. His fever had yet to break (still fluctuating between upper 90s and lower 100s) but the doctor thought that his condition was good enough to go home. At this point, we were confident that we could handle it since he was acting more like his old self.
Over the few hours that it took to write up our release papers, however, he started to show signs of sluggishness like the day before, and his fever hit the 102 area. Again, this doesn’t seem very high for a baby, but with a usually low resting temp this was discouraging. (I also wish the doctors took this into account more, but it is what it is.) We let the head nurse know of our concerns about heading home and found out that, because the doctor had already signed off, we could stay but our insurance probably wouldn’t cover it. Eep.
We called our doctor’s office (since they doctor through another hospital). We called my mother. We called a friend who just happens to be a patient advocate. Anxiously, we finally decided just to bring him home and see what we could do for him, sure to ask exactly what to do if he had another seizure.
Within 45 minutes of returning home, the baby was still “sick looking” but acting a lot better and had a much lower fever. We slept on his floor that night, a sleeping bag unzipped, blankets and pillows piled, a cool mist humidifier flowing. The cats slept closely, clearly concerned about our little family.
Things improved, although his temp still fluctuated, and we both decided to stay home Monday with him. We cuddled and hit him with the BRAT(TY) diet (for his diarrhea), and slept alongside his crib again Sunday night. Monday, we visited his doctor to determine if we were doing what we should be.
Still giving pain/fever reducing medications on an alternating schedule, he has since maintained a lower temperature but developed the sniffles and a croup-like cough. And, of course, Mommy has, too. The lack of sleep, general worry over him and what not left me open for that, I figure. I ended up taking an entire week off from work, between taking care of him early in the week and coming down with the nasties myself the rest of the week.
It was the epitome of a roller coaster weekend, and we both left it with a very changed life perspective. After experiencing some scary local events earlier this year, I can still say that this was the most terrifying moment either of us have endured to this point in our lives.
That being said, we’re no fools. We know that febrile seizures are common — like, one in every 25 kids common (and 1/3 of those that experience them will have more). We’ve heard from friends (um, and even strangers) whose kids or grandkids or niece’s child or (you get the point) have had them. In some ways, it’s encouraging and humbling to know we’re not the only people on Earth (or even on our block) to go through this. We’re not special, of course, and we know it. I’d like to call it the Febrile Seizure Club if it comes to that.
But that doesn’t diminish how frightening the experience was for us or anyone else present, or what it taught us about life, its preciousness, and even the importance of embracing the moment. So, thanks for indulging me in getting our story out there. We’re grateful for the opportunity.