The Worst Day: Ruby’s Febrile Seizure*

This is probably going to be a long post. Last week I lived through one of my biggest fears since becoming a parent. It’s taken me a few days to process what happened and be ready to write about it, and I’m doing so for two reasons:

First, I want to remember the details in case it ever happens again.

Secondly, I feel like febrile seizures aren’t really talked about, and I think that they should be. I’m sure that someone I know has gone through one with a child, but no one has ever spoken about it with me. It’s like some taboo topic that people don’t want to talk about because they are afraid that it could also happen to them. I say that because I was one of those people.

And then it happened to us.

If you know me and are new to my little blog, or haven’t been in a while, I just want to remind you that I’ve created nicknames for everyone here to protect our privacy. So far, even though I’ve been “googled”, my little corner of the internet has never been found by my students and I would prefer to keep it that way. :)

Everything actually started last Sunday. Hank woke up in the night with a moderate fever and spent a good 24 hours under the weather. His temp spiked quite high in the afternoon (104 F), but he was still behaving fairly normally and was comfortable with some Tylenol. Within 48 hours whatever little bug he had seemed to clear his system and he was right as rain.

On Wednesday we had a totally normal day. We played outside, had dinner and then I headed out for the evening. The Hubster bought me a spa package for my birthday, so I spent an incredibly relaxing evening feeling pampered while he bathed the kids and put them to bed. He texted me to say that Ruby had been tired and fell asleep on our bed, but we both attributed it to the fact that she skipped her nap that day and had been playing hard outside.

I always check on the kids before I go to bed, and when I slipped in their room at 10pm, I noticed that she felt quite warm. I stripped all the sheets off her, but within 30 minutes she was awake and quite uncomfortable. Her fever was 101, so I gave her some Tylenol and let her lay in our bed with me. She was quite restless through the night and didn’t sleep much… a cool cloth on her forehead brought her some relief but she was pretty tired come morning.

Her fever persisted in the morning and was moderately high (102), but aside from being tired she was still very much herself. I gave her some meds around 8:30 when she complained a little and she was very content laying on the couch. She didn’t have much of an appetite, but she was pretty good to drink some water and juice throughout the morning. By 11:30 I noticed that she was falling asleep on the couch, so I helped her upstairs. On our way upstairs she made a decision that I will forever be grateful for: I initially took her to our room where I thought she could lay quietly and watch a movie to fall asleep, but she was adamant that she wanted her own bed. The key difference?

There is no monitor in our room, but there is still one in hers.

I helped her into her bed and closed the door. It hadn’t quite been long enough to give her another dose of meds, so thinking she would have a long, much needed nap I went back downstairs and got lunch for Hank. I turned on the monitor and had a few quiet moments while he ate.

Twenty minutes later I heard her start coughing. I had a distinct impression that I needed to get upstairs as quickly as my 9 month pregnant body would allow me. I opened the door to her room and found her laying on her back in her top bunk, vomiting. It seemed like she was choking, and I couldn’t understand why she hadn’t rolled onto her side like she normally would if she was sick. I helped her roll over and tried talking to her, and realized that she was having trouble holding her head up. She wasn’t convulsing or shaking, but was very unresponsive. I tried calling her name and she wouldn’t respond. I helped her sit up, then asked her to look at me… when she couldn’t even focus her eyes toward the sound of my voice I knew something was seriously wrong.

It took everything in me not to panic. I carried her off the top bunk and onto the floor and immediately called the Hubster. We live and work very close to the hospital, so I hoped that if I could reach him it might be faster than waiting for an ambulance. I called his cell phone, and thankfully he picked up quickly–expecting me to be calling saying that I was in labor. When he heard how distressed I was, he jumped in the car while I got the kids ready. If he hadn’t picked up his phone on that first call I would have called 911.

Ruby was still very unresponsive. I cannot begin to tell you how terrified I was in those first moments. She was having trouble with her movements and couldn’t really hold her head up on her own. Her eyes wouldn’t focus, and every time I asked her to look at me, her eyes would roll to the side away from where I was. She was grunting and grinding her teeth, and when I asked her some very simple questions she responded slowly in complete gibberish–an incoherent string of nonsensical sounds. I have never prayed for anything so hard as I did in those first few moments. I tried my best to hold it all together to make sure I had everything we needed for the hospital, but the fear of possibly losing a child is unlike anything I have ever experienced.

I quickly cleaned her up and changed her clothes, and ran downstairs with her. I had both her and Hank in the van just as the Hubster peeled in the driveway. He jumped out of his vehicle into the van and we flew to the hospital–less than a 5 minute drive away. All of this took place in a span of less than 20 minutes.

I was able to reach our sitter while we were driving, and made arrangements for Hank to go there so the Hubster and I could be at the hospital with Ruby. He dropped me off at the doors of our Emergency unit and I ran inside carrying her, while the Hubster sped off to drop off Hank. Ruby was no longer vomiting, but was extremely drowsy and still very unresponsive.

Our ER is usually quite busy, but I have never seen the triage line as long as it was that day. It was over 20 people long and would have taken hours to get through. I stood at the doors for one moment holding my sick four year old on top of my 9 month pregnant belly, looked at the line and just started sobbing. I managed to get out, “I think my daughter just had a seizure” and things started moving very quickly.

We were ushered to the front of the line, bypassing people that I’m sure had been there for hours. People were so nice and kind, though I’m sure that being a sobbing, hugely pregnant woman with a sick child was a pitiful sight.

We sat for a few moments at a little desk waiting for the nurse to see us, and I began to comb through the recesses of my mind for everything I knew about seizures. I actually began my teaching career working in special education, and spent several months volunteering in a high needs classroom with students who often had seizures. It was really the only reason that I knew in my heart what I had seen when I found her in her room, despite not having seen any movements or convulsions. The symptoms she was exhibiting were very similar to those I remembered the students having after going through a seizure. I remembered reading something about children and febrile seizures once, and my understanding was that they were connected to high fevers. Ruby’s temp had been high but not outrageous, so I wasn’t sure what was happening.

We were eventually taken through triage, and the Hubster was able to get back in time to meet with the nurse during her initial assessment. Her temp was still hovering around 102 (39 C), and they gave her some medication to help lower it. She finally started coming around during the assessment, and I have never been so relived to hear her sass about not wanting to have her heart rate monitored. About 35 minutes after I found her she uttered her first string of words that made sense, she looked at a woman out the window and asked, “Is that Holly?” (The name of one of our sitters).

We were taken to a “room” in emerg where we spent the next several hours  monitoring her. She had wires attached all over her to watch her heart rate, blood pressure and a million other things, and she was not pleased about it. Her fever slowly came down in between visits from nurses and the ER doctor, and she napped off and on throughout the afternoon. They took blood and a urine sample to run some tests. The doctor eventually concluded that her ear looked a little infected and may have been the underlying cause for the fever, so he gave us a prescription for antibiotics, a follow up appointment with the hospital pediatrician for the next day and sent us home.

We stopped at our pharmacy on the way home so we could start her on the antibiotics as soon as possible. We seriously have the greatest pharmacist in the world–he is so friendly and makes a point to know his clients personally. As I explained the events of the day, he echoed the doctor’s advice and encouraged me to put Ruby on a schedule of alternating doses of Tylenol and Advil every three hours until the antibiotics kicked in to manage her fever. I know this is a somewhat controversial practice and not everyone supports it, but I really do feel that it made a big difference over the following 24 hours.

We made it home shortly after 6pm. Ruby’s fever started climbing again shortly after we got home. A bath, some meds and a cool cloth later I knew I wasn’t going to let her out of my sight. I helped her get comfortable in our bed, and spent most of the night with one eye open watching her. Her fever spiked again at 3:30am, but I was able to get it down quickly with another dose of meds and another cool cloth. After that she settled into a deep sleep and slept well for several hours… and awoke fever-free for the first time in over 24 hours.

After a long, long wait at the hospital we had our follow-up with the pediatrician the next day. She had me recount the events of the previous day and agreed that Ruby had experienced a febrile seizure, and that I had likely just missed the convulsions as I was trying to get up the stairs. She completed a series of neurological and reflex tests to assess her responses, and couldn’t find any lasting effects from the seizure, much to my relief. We had a conversation, then Ruby and I walked out of the hospital, ready to put everything behind us.

It’s been three days and I’m happy to say that looking at her, you would never know what we went through on Thursday. She is her usual playful, sassy self, and she hasn’t had a fever since Friday at lunch. We are continuing the antibiotics for another few days, and hopefully this will clear the infection out of her system.

It’s been a very long, worrisome few days. Every time I put her down to sleep I’ve checked on her several times… in my heart I know she is fine, but it is going to take some time before the image of how she was when I found her fades from my mind and heart.

Every healthcare professional I spoke with assured me that while seeing your child experience a febrile seizure is terrifying, they are very common and I did everything right in my response to it. Having now been through one, they also reassured me that her risk for another is  no greater than any child, I just now know what to watch for. In my heart I knew they were common, and yet I feel like they are largely untalked about, which I think heightened my fear of the entire thing. No one I know of had been through one, and I had no one’s story that I could hold on to that day, knowing that everything would be okay in the end.

What I didn’t know was that febrile seizures are not necessarily connected to a specific temperature. In my basic knowledge of them gleaned from the internet prior to Ruby’s episode, I thought that that a child’s fever needed to exceed temperatures of 105 – 106 F for it to even be a possibility. She has had fevers reach 102 F before without issue, which is why I was not overly concerned when she first started with the fever. In fact, when Hank had been sick with the same thing just a few days previous his fever had been even higher without any problems, so I just managed it as I always did.

My understanding now is that the risk for febrile seizures is not just with temperature, but how quickly the body temperature rises. If a fever spikes several degrees in a short period of time, it can trigger this response… which is what happened with Ruby. What I believe happened is that even though I put her to sleep without any sheets on, she likely pulled up all her covers and caused her body temperature to rise too quickly.

I am deeply grateful that she demanded to sleep in her own bed that day. If I had followed through with my original plan to put her to sleep in my bed, I would not have heard her coughing and choking on the monitor and it could have been much longer before I went to check on her.

Thankfully everything worked out okay and she doesn’t really seem to have any memory of the event. She knows she was sick and went to the hospital, but doesn’t remember much beyond that. It is going to take me a little longer to forget, but in the meantime I am stealing an extra snuggle (or 7) and even more grateful to have her here with our family.

So, my first week of maternity leave didn’t go exactly as I hoped, but at least I was home with her the day that it happened… and thankfully this wee babe has not attempted to make an appearance. Fingers crossed that week 2 of mat leave is a little less eventful. ;)