Wednesday was a typical day. I worked in the morning and then came home to enjoy the kids in the afternoon. Shortly after nap time, my dad and sister came over for a brief visit with the kids. I notice Jaelyn starting to get a runny nose but her mood was typical of any other day: happy as a clam. Our bed time went smoothly for
the most part. I changed Jaelyn's sheets earlier in the day and in doing so I knocked the plug for the video monitor out of the wall. Of course I didn't find this out until after she went to sleep. So rather than risk waking her up by moving the crib, I set it up on her bedside table. And naturally I was a little too loud and ended up waking her up anyway. Fortunately she went back down fairly easy.At around 10pm, Jay and I decided to go to bed. We heard Jaelyn starting to stir just before then and hoped that she would fall asleep without any issue. Shortly after turning the lights out, we heard her stir even more. It was a small cry. Nothing of great concern but what got my attention was the noise of her reaching for the monitor. She must have spotted the power light on her night stand and decided to check it out.
Jay went in to get her and a few moments later brought her into me and told me that she was shaking. I put my hand on her and didn't notice anything. I just assumed that maybe she was chilly since the fan was on high. So I took her and nursed her. That's when I felt her shaking. It was a weird shaking. Not a shiver. Not very noticeable. I could only feel it if I held her close to me and it seemed routed deep within her body. It's very eerie just thinking about it now.
Her forehead felt warm so I asked Jay to get the thermometer. Naturally she was a bit squirmy so taking her temperature was difficult but the reading that I did get was 100 degrees. I asked Jay to get the Tylenol because I knew that her temperature was most likely at least 2 degrees higher. Once Jay got back to the room, I handed her off to him and ran into the office to find out how much I could give to her. Before I knew it, I heard Jay yell, "Something’s not right. Something's not right." So I ran. I could hear the panic in his voice. I grabbed her out of his arms and immediately could tell something was wrong. She was almost unconscious and starting to convulse.
I ran in the bathroom and started splashing water on her head and yelled to Jay, "Call 911! Call 911!" I ran down into the kitchen and continued to splash water on her while Jay called. He then handed me the phone and I told him to call my parents. The 911 dispatcher told me to lay her down on the floor and not to touch her. That was the hardest thing to do because all I wanted to do was hold her. He then instructed me to get a cool wash cloth and put it under her arms so I relayed the instructions to Jay. I sat there and watched her seize for what seemed like hours. She looked so helpless. Her breathing was off and her eyes were only half open. My heart was breaking the entire time. There was nothing else I could do but to watch her until it was over.
I asked the dispatcher if it was normal for how long she was seizing and he said yes and that it could last 5 minutes. The seizure was likely caused by a sudden spike in her body temperature and she would likely seize until her body temperature dropped back down. She finally stopped a minute or two later and looked like she was almost unconscious. Sort of like she was drifting off to sleep. That terrified me but the dispatcher assured me it was normal.
I finally picked her up and hugged her just as a police officer arrived. Out of the corner of my eye I noticed he was carrying a breathing mask for CPR. He started taking our information down
and a minute or so later the ambulance arrived. The EMT checked her pulse and listened to her breathing while I held her. The fact that they let me hold her still was relief to me. I didn't want to let her go. By this time she was slowly starting to come around again but she was still far from the normal Jaelyn that we all know and love. The EMT asked me which hospital we wanted to go to and we decided on Cooper Hospital. The ambulance did have a car seat but Jaelyn was too small for it so they had me sit on the gurney with her in my lap. As I was getting strapped onto the gurney Karen pulled up. It was sweet relief to see her especially with her training as an EMT. She is my backbone whenever I have a medical dilemma so I asked for her to ride in the ambulance with us while Jay waited for my dad and Katie to arrive.
As I was loaded into the ambulance I noticed a few neighbor's outside watching what was going on along with the paramedic’s vehicle. The paramedic finally joined us in the ambulance and told me they were getting Jaelyn's car seat from my car because they felt she was stable enough to ride in that. After they strapped the seat to the gurney, I buckled Jaelyn in. She was not happy at all. Especially once the paramedic started hooking her up to the monitors. I tried to comfort her as best as I could. Holding her hand. Rubbing her leg. Touching her cheek. They monitored her heart rate, blood pressure and oxygen saturation levels for the entire ride. The EMT also placed an oxygen mask next to her head.
The ride to the hospital was the longest ride I have ever taken. The only comfort I had was knowing that we were surrounded by medical professionals who knew what they were doing. I surprised myself with my composure. I held myself together quite well. Crying was not an option. I had to take control of the situation and be strong for my baby girl. I think the first time I felt emotional was when we arrived at the hospital and saw the look on stranger's faces as we were wheeled into the ER.
Once we got in the ER, they immediately weighed her. Her temperature upon arrival was 102.7 so they gave her Tylenol and began with the tests. The first thing Jaelyn had to endure was a catheter to collect a urine sample. It took them 2 tries before they got it in and she screamed the entire time. I just leaned over her and hugged her the entire time. The second thing they did was insert an IV for a blood sample. It took them 3 tries before they got it in and again, she screamed the entire time. I'm not sure if it was the pain of the needle or the fact that she was being held down. I did my best to comfort her by kissing her and holding her hand but nothing seemed to help. Finally they were done and I was able to hold her in my arms where she finally fell
asleep. Now it was just a waiting game so Jay and Karen decided to get something to drink while Katie waited with me.Shortly after they left, the pediatrician came in and told me that because Jaelyn was under a year old, they had to run some other tests to rule out infection of the brain and spine such as meningitis. Ok, fine. What tests? A CAT scan and a spinal tap. She informed me that the spinal tap could take several attempts to do. It could take them a few tries to even get the needle into her spine and even if they did get it in, it didn't mean that they would be able to get any fluid. At this point I didn't know what to think and the only person in the room with me was my 14 year old sister. I needed my husband. I needed Karen. The spinal tap terrified me. I asked if I could be in the room and she assured me yes. At this point, that was my only concern. A few minutes later Jaelyn and I were wheeled off for the CAT scan. Katie was left to relay the news to Jay, Karen and my dad.
I stayed right by Jaelyn's side during the CAT scan. Fortunately she slept though it. I'm not sure what they would have done if she was awake. I even had to wear the lovely gown to protect myself from the radiation. I think that weighed more than me! Once finished, they wheeled us back down to the ER. We were probably gone for 15 minutes at the most.
Back in the ER, I discussed the spinal tap with Jay and Karen. Our main concern was whether it was necessary or not. The head pediatrician came into the room a short while later and told us that we could refuse the testing but this was the only way that we could rule out an infection of the brain. Meningitis is a serious infection that can lead to death. As such, we agreed that it was best to go forward with the spinal tap. The only issue now was that the pediatrician did not want me to be in the room for the procedure. She cited the issue of a sterile environment but I truly think it was because it's a delicate procedure and if I overreacted, it could distract the doctor who was doing it. I understood but was still upset.
A few minutes later, the room began to buzz with people as they prepared for the spinal tap. Jay and Karen left the room while I waited to hand over Jaelyn. Much to my surprise, I learned that they were allowing me to stay in the room. Sweet relief. Later on I found out it was because they thought I was refusing to leave. Not the case at all --- just waiting until they told me I had to leave!
It took 3 people to hold Jaelyn in position. They laid her on her side in a fetal position and put a flow of oxygen near her. I stood at the foot of the bed near the curtain and started swaying from side to side while saying a prayer as tears finally fell down my cheek. She screamed the entire time because she didn't like being held down and I reassured her that everything was okay. Two doctors were in the room for the procedure. One performed while the other supervised. They told me everything that was going on. After they numbed her back slightly, Jaelyn finally started to calm down. Soon after that the doctor told me they were almost done. They were able to retrieve fluid on the first attempt. By this point, Jaelyn finally had exhausted herself because she slept through the later part of the procedure.
The spinal fluid was sent to the lab shortly before 1am. We were told the results would be back within an hour. I think hospitals and doctor's offices must use a different way to keep track of time because at 2:30, we were still waiting. By 3:15, we finally managed to track one of the doctor's
down. Thankfully the test results came back negative for any infection as did the CAT scan. Her blood test came back with a slightly elevated white blood cell count and her urine sample came back with elevated nitrate levels. The doctor's thought Jaelyn possibly had a urinary tract infection and sent the urine sample off for further tests. In the meantime, they gave us an antibiotic as a precaution. By 4am, we were finally discharged. After all of the tests, it was confirmed that the seizure was a febrile seizure. Our first day home from the ER was exhausting. Jaelyn only wanted her mommy and I was happy to oblige. The fever hung around for a few days even with alternating between Tylenol and Motrin. I think she was also uncomfortable from the spinal tap as a back ache and headache are common after the procedure. Going to bed at night was difficult for me. I was afraid to let her out of my sight but each day has gotten easier. The first night she slept in bed with us and for several days following that I slept on the floor in her bedroom.
We followed up with our pediatrician the following day and I learned just how common these seizures are. Jaelyn may never have another one again. But there is a 30% chance that she could. Most children outgrow them by the age of 5. Hopefully that was the first and last one so we won't have to outgrow anything.
