I have contemplated about posting this but ultimately it is too important not to. Please understand that I tell you this story because our child is amazing and there are many people that need thanking and not because we want attention or sympathy.
On Wednesday June 17th between 11 pm and 8 am Jack suffered 4 seizures. This has never happened before and was the scariest time in my life. He came in my room around 11:30 and was “out of it,” and very uncoordinated. He was unable to lift his arm to flip the light switch. He told me that he was very scared and thought he was going to die. Andy was downstairs watching TV so we went and talked to him. After about 30 minutes and some ginger ale, Jack calmed down and was ready to go back to bed. Looking back we now think Jack had had a seizure prior to coming to our room. I asked him to stay in my bed so I could keep and eye on him. He tossed and turned and had very rapid breathing. I don’t remember how I knew something was wrong but I remember jumping up and turning on the light. It was clear to me that he was having a seizure. His arms were straight and so stiff they couldn’t be pushed downward. He was convulsing and not responsive. At this point I reached for my phone to call 911 while screaming at the top of my lungs for Andy who had fallen asleep downstairs watching TV. Andy came running up, I told him (screamed!) that Jack was having a seizure as 911 answered. Thank God for Andy staying calm and for the 911 operator. She was amazing and explained we needed to turn Jack on his side and just prevent him from falling off the bed. His lips were turning blue I told her (actually I screamed) that Jack was not breathing. Andy was behind Jack, holding him on his side, and told me that he could hear him breathing. The seizing stopped within a minute or two though it felt like a lifetime. The operator stayed on the phone and told me to put the dogs outside, unlock the front door, and that the firefighters would be there before the EMTs but they were trained for life support also.
The EMTs and Firefighters pulled up at the same time and as they arrived I called my parents. My dad answered and learned what had happened as I held the phone and told the EMT the story. My dad hung up and headed to our house to stay with Ryan while I headed upstairs with the EMT. (The other EMT and Firefighters were already upstairs with Jack). By this point Jack was starting to come to and answering questions although his answers were sort of garbled. Ryan had woken up and I was talking to him as the EMTs and Andy helped Jack down the stairs where the gurney awaited. As more minutes passed, Jack become more and more coherent and went on to tell me that he was very scared during the seizure he knew his arms had been flailing he said could not breathe. But then he “fell asleep” and didn’t remember anything else. Basically this translates into he remembers going into the seizure but doesn’t remember anything after it starts. A gift of his seizures is that he doesn’t remember the “during” which is better because it would make things so much scarier for him.
Jack and I left in the ambulance for Dell Children’s Hospital; Andy followed right behind as soon as my Dad arrived to look after Ryan. Jack vomited during the ambulance ride and was given nausea medicine. They checked his blood sugar and monitored him during the remainder of the ride.
We spent about 3.5 hours in the ER at Dell Children’s. Much of the time was spent waiting, praying, and pacing. During this time your mind runs a muck and you think of the worst-case scenarios and the possibility of losing your child. Several times I had to leave our curtained area because I was breaking down in tears and literally sick to my stomach. The length of time we sat and the apparent lack of urgency were somehow comforting because if the hospital was really worried then surely they would be moving faster? Jack was great. He just hung out and watched Disney channel. After an eternity we saw a Resident Doctor and the main ER Doctor and both felt that this was likely a one-time incident but told us to follow up with their Neurology clinic during the week. We were told if he had 3 seizures in 24 hours or had one lasting more than 5 minutes we needed to come back. We were released and headed home grateful that we had dodged a bullet and tired as hell. By this time it was about 4:00 am on Thursday. Jack ate some crackers and wanted to stay up and watch TV. We told him he needed to get some rest and even asked if he would stay in our room. Jack declined and went to his room and fell asleep; Andy and I flipped off our lights, and climbed into bed and then heard, “MAMA!” We go running in to his room and he is in a full-fledged seizure. Jack would later explain that as the seizures start he has a sensation of falling and so as he had just enough time to call out before the seizure racked his body. We were exhausted, devastated, and scared. We looked at each other over his convulsing body and cried. The bullet had just changed trajectory. There was no way I could go back to sleep and instead I just stayed on the floor next to Jack’s bed. Listening hard to his breathing and ready to pounce should he have another “event.” Around 8:00 Jack began seizing again and though I was calmer this time I still screamed for Andy. This seizure seemed to be shorter than the others but was still as scary. Jack was so exhausted after this seizure that he immediately went back to sleep. I paced the floor till the pediatrician’s office opened at 8:30 and we made an appointment for 9:15. Jack was still very groggy and had a massive headache. We didn’t want to give him anything in case there were tests that had to be done but he begged for meds to help his headache. He was miserable and slept during the ride to the doctor, in the waiting room, and in the room on the exam table. Our doctor, Dr. Salinas, checked him out and said we needed to return to Dell but she was going to call ahead and talk to the Neurology Department first. So grateful that Dr. Salinas didn’t just dismiss us and send us off to sit in the ER for several more hours. She gave us the names of the Neurologists and said we were not to leave the hospital till will had a full workup. So hi ho, hi ho, back to the ER we go…
It was around 10:30 am on Thursday when we headed back to the ER. It had been less than 12 hours since our ordeal began but I felt like I had aged 100 years. Andy dropped us at the ER door and the nurses were ready for us when we arrived. Jack was put in a wheelchair and they took us back to start vital signs. We told our story for the 10th, 11th, and 12th, time to various ER nurses and docs. After about an hour we were told we were being admitted for further testing which we anticipated based on what Dr. Salinas had told us.
We were assigned to room 452 in an entire section of seizure cases. Many of the rooms around us had tiny babies which was heartbreaking. The afternoon was fairly uneventful except for a visit from Nana (Andy’s mom), bringing homemade cookies. My stomach was still in knots and though it was growling I could not eat or sleep. Andy was able to grab a few minutes of rest before the doctor came in and we told our story once again. The doctor had spoken to Neurology and informed us that Jack would be getting both an MRI and EEG. Our day nurse, Rachel, was wonderful and took great care of us. Andy left around 5:00 to pick up Ryan at my sister’s house and stay home with him. We wanted to make sure Ryan had a sense of normalcy during this crazy time. After Andy left and Rachel went home for the day, I really started to get nervous. Jack’s EEG was scheduled for bedtime and all of his seizures had taken place during sleep so I was very apprehensive about the coming hours. Several times I stepped into the bathroom in tears to text Andy. Even though I knew we were in a safe place, with a floor of trained medical personnel, I was afraid. I was afraid of Jack having another seizure, I was afraid of what the tests would show, and I was afraid of losing my son. It had also been more than 36 hours since I had slept and I was physically and emotionally raw.
Jack – EEG
The EEG tech had an emergency in the NICU so we did not see her until 11:00. Jack and I were both nodding off by then and EEG set up takes 45 minutes. She began meticulously measuring points around his head and then gluing the electrodes in his hair. At this point I was thankful he had recently gotten an all over buzz cut so the glue clean up wouldn’t be as brutal. After all the electrodes were placed they did a strobe test to see if flashing lights would induce a seizure. They did not. Next he had to do a “hyperventilation test” and essentially do fast breathing for 3 straight minutes. It was like watching my 11 year old son go through Lamaze. (You have strange thoughts under stress and little sleep.) This test did not cause an “event” either. At this point Jack was told he could go to sleep so I patted his back for about 10 minutes till he was snoozing and laid my own head down on a fold out couch right next to his bed. I remember the EEG tech leaving and asking if we needed anything and I think I mumbled a response. Nurses came in and out every hour to take his vitals and he and I were able to get a bit of rest until 6:45 when they came to get him for the MRI. We chose to do the MRI with sedation because Jack has a history of anxiety and an MRI can be scary. They took us downstairs to pre-op and I texted to get Andy’s status. He was in traffic on I35 but he and Ryan were hurrying to get there before Jack was sedated. They arrived in time and Jack was wheeled off for MRI around 7:25 am. Andy, Ryan, and I went to the cafeteria to eat and kill some time. The MRI was scheduled to take 1 hour and they gave us a nifty pager that would go off when Jack was in recovery room. About and hour and half went by with no sound from our pager and I got very nervous. What if he had a seizure in the MRI and they couldn’t get him out? What if he didn’t wake from the sedation? We got a page a few minutes later but it turned out to be a false alarm. I was back to pacing the floors and wondering where my child was. After another 20 minutes I went to the nurse’s station to ask for an update as I figured out there was an electronic billboard/schedule in the waiting room. The billboard showed Jack had gone to recovery 30 minutes prior. WHY WEREN’T THEY LETTING ME SEE HIM?? The nurse talked to someone in recovery and she said it was ok for us to see him now but only 2 people could go. I let Andy go and Ryan and I stayed in the lobby. A few minutes later, Andy let me know they were heading to the room shortly so Ryan and I wove our way back to room 452. Jack and Andy arrived soon after. Jack and was still groggy from the sedation and complaining about having an IV. We were told the Neurologist would be by to see us and give us results of all the tests. Andy decided to head to work and we agreed I would take copious notes and fill him in after seeing the doctor. The floor Resident Doctor came by to check on us with a team of students. He filled them in on Jack’s case and said he believed they were ruling the seizures as Benign Rodandic Epilepsy. I checked with “Dr. Google” and confirm that the symptoms of that are very closely aligned with what we experienced with Jack.
Our Neurologist, Dr. Elton, arrived around 11:30. She coincidentally also runs the Dell Children’s Concussion Clinic so we can move Jack’s concussion care all to her. Dr. Elton checked Jack over and explained her diagnosis. The MRI and EEG were both normal and since Jack had not experienced another episode while in the hospital, they were basing everything off our recollection of his seizures, plus his exams. Dr. Elton said that a clean EEG and MRI are both good things and that about 70% of kids have clean tests. This is a positive thing because it means nothing “ugly” is lurking and the chances are greater of outgrowing the seizures. There is no definitive cause for the seizures although dehydration and lack of sleep can contribute. The seizures are not at all related to his concussion from November of 2014 (I asked!). Based on the fact that Jack had so many seizures in such a short time, Dr. Elton felt it was best to start him on meds twice a day. This medicine will also help his migraines so that is an added benefit. Dr. Elton’s diagnosis was Focal Induced Idiopathic Seizures. I asked about the two differing diagnoses and Dr. Elton said they are similar and the medicine being used to treat Jack works for both. I asked lots of questions and Dr. Elton answered everything and made me feel comfortable. We will see her again in 6 weeks to follow up. Jack was given his first dose of medication and we were released around 2:30 on Friday. A little more than 24 hours in the hospital but it seemed like an eternity. Dell Children’s is an amazing facility and they have gone to great lengths to make staying there comfortable for the patient and the parent. I truly felt like everyone went above and beyond but especially nurse Rachel. We are so grateful to have a state of the art children’s facility close to us. When the EMTs first asked what hospital we wanted, I am so glad that we chose Dell.
It has been a few days since we got home and we have remained seizure free. Jack had to drop out of swim team as a safety precaution due to Dr. Elton’s request. His meds are ramping up over the next two weeks so that will be the end of the swim season. He will be able to play lacrosse and his saxophone and we are hopeful that the worst is behind us. Andy and I check on him about 100 times a night and we have all been hugging and kissing a lot more lately.
It seems so cliché to say, “things can change in an instant” but that is really how I feel. Our lives have changed but yet we are so incredibly blessed. I have never prayed as hard as I did over the past week. We were able to leave the hospital after 24 hours with a diagnosis that is manageable with meds. So many families stay for long periods at the hospital and some leave without their children. My heart is heavy with pain for those whose children that are in the hospital now and yet my heart is full that my child is home safe. It is such a dichotomy to be relieved for yourself and your family but know you could have easily had another outcome. There are not enough words to thank all the people that have helped us over the past week. I am so proud of Jack. He has been tough as nails and stronger than me during all of this. We need to thank: our families, our coworkers, all the friends that have reached out, the 911 operator, the amazing EMTs and firefighters, the ER nurses and docs, Dr. Salinas at Pediatric Center of Round Rock, nurse Rachel, all of the nurses and doctors on our floor, the EEG tech, the anesthesiologists, the MRI tech, Toshia with Dr. Elton’s office, and of course Dr. Elton. I have the most amazing husband that held us together during this insane ordeal and both of my kids are phenomenal. When I tell you that it takes a village, it really does take a village. We are amazingly blessed and eternally grateful. This is just the start of our journey but we have the best village supporting us.
