Sunday night Claire was acting sick. We were all outside playing with the neighborhood kids and she wanted to go inside. She didn’t want to play which was the first red flag that she was not feeling good. Monday morning she woke up with a fever and she was completely lethargic. She had just finished antibiotics for an ear infection so I was disappointed that she was sick again. I took her to the pediatrician and he said she still had an ear infection. I brought her home and she dozed on the couch most of the morning. Even when she is sick she usually doesn’t act that sick so I was really worried about her.
At about 2:00 I was rotating laundry and I had a very strong impression to check on her. I walked in to her having a seizure. She was stiff shaking and pale. I was terrified. I think everything I knew as a nurse went flying out the window. I was in terrified mother mode. After what seemed like an eternity but probably only 20 to 30 seconds, the seizure subsided and she went completely limp. I have no idea how long she had been seizing prior to me finding her. Her lips were blue and she was still pale. I gave her a few rescue breaths and she started breathing on her own. I grabbed my phone with one hand while trying to cradle her in the other to call 911. It was so difficult to take my focus off Claire while I tried to give the 911 operator all the correct information. She wanted to keep me on the line while we waited for the paramedic to arrive but I refused. I was compelled to keep all my attention on Claire. The phone was way too distracting. The paramedics came after only about a minute or two. Our house was surrounded with fire trucks police cars and an ambulance. They were so fast. I handed over Claire and I noticed that I was shaking like a leaf. She was still non responsive but breathing on her own. They quickly put her on high flow oxygen and got us in the ambulance. Thank goodness my friend Melissa next door saw the ambulance and came running over. She told me she would pick Brad up from school and then keep him. They let me ride in the back of the ambulance with Claire. As soon as we were on the road I called Randy who happened to be on his way home from work and told him to meet us at the hospital. We live about 15 minutes from the hospital. After about 5 minutes in the ambulance I knew Claire was coming around because she looked over at the EMS worker and was giving him dirty looks. She still wasn’t talking or following directions but her nasty glares gave me comfort.
Randy was waiting at the ambulance entrance when we arrived. The nurses quickly got us settled and the doctor came in and told us she had a febrile seizure. They wanted to observe her for about an hour and then we could go home. In exactly one hour a set of vital signs, a donated blanket and stuffed animal we were shuffled out the door. She still had a fever and despite all the Tylenol and Motrin and she was still in a daze but I felt comfortable with the plan since there was nothing more they could do.
We got home around 3:30 picked up Brad and settled Claire on the couch with a movie. After about an hour Claire seemed to perk up. She got up from the couch and played a little. She wanted McDonalds for dinner so we figured she was feeling pretty good. At about 5:00 I noticed she was doing strange things with her tongue. Soon it became involuntary and rhythmic. I was concerned so I called the Emergency Room Doctor. He said it made him concerned but to watch it and call him in 2 hours. Of course that did not put me at ease so I called one of the Emergency Room Doctors that I worked with and trusted. He told me what she was doing was not typical for febrile seizures and if it was his daughter he would take her Primary Children’s Hospital. I also called Dr. Shakula in Salt Lake and he gave me the same advice. We quickly made arrangements for Brad to spend the night with Melissa and asked our friend Zak Miller to come over and help give Claire a blessing. The blessing calmed my nerves and helped me keep my focus without freaking out.
On the way to the hospital Claire’s behavior became bizarre. She started asking strange questions, seemed really confused, and was really agitated. She was swatting at things in front of her saying there were bananas in front of her face. She kept telling Brad to leave her alone and he wasn’t in the car. I had to keep her in her seatbelt because she was trying to climb up to get out the window. The tongue thrusting became worse and she started smacking her lips and thrashing around. She kept shaking her head back and forth and her eyes seemed to spin like she was dizzy. I felt so bad that I couldn’t calm her down or make her less confused and scared. Once we arrived I took her to the front desk and told them what had happened earlier that day and that I thought she might be having another seizure or something like it hoping that the check in process would be immediate. Waiting in the waiting room was torture, the triage process was agonizing, and wadding through student then resident then finally an attending physician was just plain cruelty. He did witness what she was doing and really didn’t have any answers for us other than her behavior was very atypical. He ran a bunch of blood and urine tests to rule out sepsis or major infection. He said we needed to be admitted so that Neurology could evaluate her in the morning. All we could do was wait…and wait…and wait. There were times when Claire didn’t recognize Randy. Claire’s Aunt Kari was working that night and she didn’t recognize her either. She would cry out “where is my mommy” while I was holding her looking in her face trying to reorient her. It was terrible. At about 1:30am she calmed down enough to fall asleep. She was fighting so hard to stay awake so I was thrilled when she lost the battle and settled down. While she was sleeping the symptoms stopped.
We saw several Doctors during the day without any answers. They all gave us the same response … not a typical febrile seizure. By mid-morning Claire was bouncing off the walls and ready to be a three year old. Our nurse recruited some reinforcements. The hospital child life volunteers took her up to the Never Land playroom. She painted made silly putty and played house with the dolls kitchen and washer and dryer. We finally got the call that the neurologists were ready to see Claire.
(Neverland Playroom at PCMC)There were 2 female resident neurologists that evaluated her. They asked a million questions and told us that the attending Neurologist would probably want an EEG of her brain and an MRI scan. When they left the room Claire said “I LOVE those lady doctors.” They were the only ones that Claire would cooperate for. I had it in my mind that I was really happy they were going to do these tests and I would put my foot down if I was told anything different. I didn’t want to leave the hospital without answers. At 1:00pm the 2 attending Neurologist came in to the room. They said they had discussed Claire’s condition with the hospital physicians and their residents and concluded that Claire had a febrile seizure with a very long postictal state. (Postictal is the period of confusion after a seizure) Of course I had a million questions that they answered thoroughly. They didn’t want to do the EEG or the MRI because Claire was completely back to normal and those tests would show them nothing and there would be nothing to look for. Plus they would have to sedate her for the MRI and it just wasn’t worth the risk. She had no signs of a stroke or a tumor which was very reassuring. They said we could go home and just keep an eye on her. They also told us that there was a 50% chance that seizures would reoccur with fevers but that she should grow out of them by the time she was 6. Not quite the news I wanted but thrilled it was nothing permanent, life changing, or threatening. We were discharged from the hospital and headed home.
We got home in time to pick up Brad from school. He was so cute and concerned about his little sister. He made her a note that was darling. My sweet sister in law Kamie was in Logan taking care of her sick mom for the week so she came over bearing gifts for Claire and Brad and yummy pizza. We were hungry and tired and didn’t feel like making dinner so we were more than willing to accept her loving service. Thank you Kamie we were very grateful.
After getting Brad and Claire settled in bed for the night all the events of prior 2 days came to a roaring head. I LOST it. I think through it all I was battling stress and fatigue and then the emotional exhaustion of it all settled in. I sobbed uncontrollably in Randy’s arms. It was the kind of crying that shook me to my core. I asked Randy to give me a blessing so that I could get a grip and get back to being a caregiver and mother. His blessing gave me strength and comfort. In the blessing I was reminded of our loving Heavenly Father who understood my pain and grief watching a child undergo hurt and pain. I felt the magnitude of his love for his child and the agony he must have felt as he watched his only begotten son suffer the sins of the world, then tortured and sacrificed without the ability to make it stop. How helpless he must have felt. It was a tender moment where my testimony was strengthened that I will never forget.
Claire slept in my bed and I made Randy sleep downstairs in the guest bedroom. I think it was the best night sleep Randy had ever gotten. It was uninterrupted, cool and dark. I was so tired I only woke up a few times to reach over and make sure Claire was breathing. The next morning Claire woke up with a fever so of course I was a slight wreck. I was vigilant with the Tylenol and Motrin and didn’t let her leave my sight. We made it thought the day and my great neighbor Heather Miller brought us dinner. She made enough for left-overs so I was really grateful. She is a great cook!!! It was so yummy. We are slowly getting back to normal. Randy and I returned to work and Claire is still adjusting to being the complete center of attention. She believes she is royalty right now. Last night was the first night she slept in her own bed.
I am so thankful for modern medicine. I am so grateful for my wonderful children who I couldn’t live without. I am so grateful for all the prayers that were said in our behalf. I am grateful for the texts and calls of love and concern. Please don’t be offended if I didn’t return them or call back. They were heart felt and appreciated. I am grateful for my 1st counselor Heather Miller who took over all Primary duties so I could focus solely on my family this week.
I am also grateful it is over!!!!
