Most of you are aware of the seizure Daniel suffered a week ago. Since I was young, writing has been therapeutic for me, and this is not the first time I have written about a seizure situation. As usual, Join Team Daniel is long overdue for an update, and I had a draft in the works, but this post will come first.
Dave and I had been planning since September for a respite getaway for the two of us. Daniel’s regular aide (as of August), Rachel, and her husband, Maurice, are wonderful caregivers and had agreed to stay with Daniel and Hannah for a week while Dave and I took a getaway to Curacao. The weekend before we were to leave, I had gotten sick, and after testing negative for Covid, flu, RSV, and strep, we decided to go ahead and go, even though I was not feeling well. Things at home went really well for a few days. Rachel and Maurice had done a beautiful job preparing for their time with the kids, and the kids were thrilled to have these days with them. They did some fun things together as well as the usual day-to-day things.
Curacao is beautiful and warm, and we enjoyed the all-inclusive resort where we were staying, but we were very run down, and my sickness was not improving. We snorkeled off the beach a little on Saturday, but I found it exhausting and ended up sleeping much of Sunday. A doctor came to the resort on Sunday evening to see someone with an injured knee, so he also saw me, diagnosed me with bronchitis, and prescribed a couple of medicines.
Back at home, the kids had gotten to bed, and the seizure alarm triggered Maurice to go in and check on Daniel at 8:09 when he found Daniel seizing. Rachel and Maurice handled this situation really well. The night before, Maurice had told Rachel that he wasn’t comfortable if Daniel were to have a seizure and felt they needed to go through the action plan step by step so he would know exactly what he needed to do. They did so, dividing up tasks and determining who would do each thing if Daniel were to have a seizure. This was clearly God’s grace in prompting Maurice to speak up about this, as the very next night, they would need to implement the seizure action plan.
I wrote last Spring about Daniel’s upcoming surgery to implant a VNS (vagus nerve stimulation) device. That happened on May 1st, and Daniel recovered from that surgery well. The VNS discharges an electrical impulse to Daniel’s brain every five minutes to regulate or calm down any aberrant electrical activity and reduce the likelihood of seizures. In addition, in the event of a seizure, a magnet can be swiped across the location of the implant on Daniel’s chest to trigger a minute-long electrical impulse to try to stop the seizure. The VNS not only reduces the likelihood of seizures, but it can also help people with epilepsy to think more clearly. Daniel experienced this benefit and had told us in the summer that since he had the VNS turned on, “it is easier to think”. This has been obvious in the depth of communication he has had and the level of processing he has been able to do with school work and general conversation. From the time of the implant until December 18th, there had been no seizures. December 18th, he had a seizure, and I swiped the magnet, which stopped the seizure within 2 1/2 – 3 minutes. It was one of the shortest seizures Daniel had ever had, and we were very encouraged at how effective it was.
Since he had had this recent seizure, and the magnet had worked so well, we felt it was unlikely for him to have another so soon but that the magnet would again work effectively. This proved not to be the case. Despite swiping the magnet several times, the seizure did not stop. After the first swipe, Rachel tells us that Daniel took a deep breath like he does when a seizure is stopping and seemed to calm down with less twitching. However, this only lasted a short time, and the seizure continued stronger than before. By this time, Maurice had called 911, and Rachel got us on FaceTime, so we could see what was going on. Rachel administered the rescue medication, and for the first time in years, the paramedics arrived in just a few minutes. It was evident that this seizure wasn’t stopping, so I urged the paramedics to get Daniel in the ambulance and do their assessment there because they needed to get him on the way to the hospital. One of the paramedics picked Daniel up and carried him to the ambulance with Maurice right behind. Rachel would stay back at the house with Hannah, who was sleeping.
Maurice kept Dave and me on the phone, so we knew and could see what was going on. Daniel continued to seize, and we all agreed that another dose of medication was needed to try to stop the seizure. They were initially heading to Levine Children’s Hospital in Charlotte. As is often the case with additional medication, Daniel’s breathing slowed, and it became necessary to go to the closest local hospital to stabilize him. There, a trauma crew took over and really hammered Daniel with medication to get the seizure to stop, which still took a long time. Overall, Daniel seized for well over an hour, which is terrifying. Some people believe seizures don’t cause damage, but our doctors have warned us that brain damage can occur within minutes, and lengthy seizures can cause devastating neurological damage.
Back on the island, Dave and I were a wreck. This was the worst-case scenario we had discussed and planned for, but it was still very frightening. We prayed out loud for God to stop the seizure, spare Daniel’s life and prevent any brain damage. It was so hard being so far away and having no control over the situation. That we have control is an illusion anyway, but when I am present when something like this is happening, I provide information about Daniel, try to help in the ambulance, hold his hand, whatever I can do. I felt like my prayers were bouncing off the ceiling, and wondered if we were wrong to have been on a getaway or if this was going to be the end of Daniel’s time on earth. Dave voiced concerns about possible impairment resulting from the seizure and how that was as frightening as Daniel dying. I paced the room, praying and praying. It felt like absolutely forever before Maurice told us they had stopped the seizure.
With all of that medication, Daniel stopped breathing and the team took control of his airway, intubating him. They then tried to get a helicopter to transfer him to the children’s hospital, but there was bad weather around the hospital in Charlotte, preventing the helicopter from taking off. By this time, Rachel had turned Hannah’s care over to Dave’s mom, Lorie, who lives in the apartment adjacent to our house, and Rachel had come to the hospital to be with Maurice and Daniel. They waited for hours for an ambulance to come transport Daniel to Levine Children’s. During that time two trauma nurses kept close watch over Daniel and adjusted his sedation medication as needed to keep Daniel calm and from pulling out the tube down his throat that was keeping him breathing. Rachel and Maurice did amazing, staying with Daniel and talking to him to calm him. Finally around 2:30 a.m. an ambulance took Daniel and Maurice to Levine and Rachel followed in the van. Close to the hospital Daniel began to come to and was struggling with the tube in his throat. Maurice told us they just took off running to get him inside and medicated as soon as possible. He was admitted directly to the PICU and before too long they took the tube out to see if Daniel could breathe on his own. He did, and then proceeded to sleep for a while.
Dave and I were soon on the phone trying to get our flights changed to come home as soon as possible. To our chagrin, the earliest flight was at 5:45 p.m. Monday. It was a long night and a long day Monday. The staff at the resort were very kind. The lady at the desk at breakfast took one look at us and thought we were hung over. We explained what had happened, and she was very sweet in trying to take care of us. We walked to the botika (pharmacy) and got my prescriptions filled, took a nap and packed up our stuff. Our flights went without issue, though customs in Miami was nuts and we had barely any time to make our connection. We finally got to the hospital around 1:00 a.m. Rachel and Maurice had been with Daniel continually for the previous 24 hours plus. Often the first day after a seizure is very challenging with Daniel’s behavior and frustration with IVs, feeling horrible because of all the medicine, and the general trauma of having been through the seizure. Rachel and Maurice handled it like champs. They went home with Dave, and I stayed in the hospital with Daniel. It was SO GOOD to see him and to hug him and kiss him.
Daniel seemed to be doing well. He had a sore throat and cough from having been intubated, but the medical team cleared him for discharge and we were able to head home late Tuesday morning. He has done quite well this week, though he has slept in very late each morning, which told me how much his brain needed rest. He is not a sleeper-inner at all, so for him to sleep til after 9 or 10 each morning was notable. There does not seem to be cognitive impairment as far as I can tell. I think there is a little physical regression, but he has been quite weak so we have not pressed him to do his walking practice or to go to school. He has had some emotional struggles, yesterday being very acute. As Christians, we talk about heaven and how people are healed from their bodily infirmities or sicknesses when they die. For Daniel, this means that when he gets to heaven he will be able to walk, and he talks about wanting to die so he can walk. I don’t know that this is coming from depression, so much as frustration with the inability to walk independently and feeling embarrassed that everyone else at school and in our family walks around. He wishes that all the kids at school used wheelchairs, and I can’t blame him. These feelings and thoughts about dying seem to be logical conclusions from his perspective, but it is very hard to hear him talk like this. Yesterday there were lots of tears, angry outbursts, and pleading with me to call 911. He had an appointment with his counselor yesterday afternoon, and that seemed very helpful. He has been his usual cheery self today.
Dave and I continue to be very run down, and I am still not better. I haven’t heard well out of my right ear since our flight Monday night, and I probably need to go to the doctor yet again. We are so weary, and our getaway ended up being not at all restorative. We didn’t sleep well at night because I was coughing so much, and then with the shortened trip and the trauma of the seizure on top of everything, we are as tired as we were before we left, if not more so. This morning I woke up at 8:30, went out to the couch where Dave and Daniel were, and fell back asleep until noon. We have all been in our pajamas all day, and now it is almost time to go to bed again.
We are so incredibly grateful for the number of people who quickly started praying for Daniel and for us. FaceBook may be a lot of things, but as a quick way to implore our dear ones to pray, we are thankful for it. Many of you reached out right away, and it touched our hearts that you did. Thank you. We are very aware of God’s mercies to us in this time. God would not be less good if this situation had a different outcome. He is faithful, and he is gracious. We are acutely aware that with Daniel’s medical complexity, things could go differently at any time. God’s presence and comfort are there for us, even when we struggle and cry out for mercy. Honestly, in the area of weariness, we are still crying out for mercy and would be so grateful for your prayers for us in this way. Our move this year to a single-level home has been important, but it has been hard, and we have been sick so much of the time since we moved. The kids had Covid in July, Dave had it in August, I had it in September, then Dave had the flu badly in November, and Hannah was sick most of December into January. Now I have this pesky whatever-it-is and will be very glad to see it go. It has been hard to get our feet under us in the new house with all of this going on. And, of course, Dave is working, and I am in grad school, so there is always so much going on. We were without help for Daniel through the summer and were so incredibly grateful when God sent Rachel our way in August. Rachel is in the same grad school counseling program I am in at Gordon Conwell, but we had not met each other when she answered my Care.com ad for help. She and Maurice have been an “over and abundantly beyond what we ask or think” answer to our prayer for help. It is so good to have help from like-minded people who fit into our family easily and enable us to function so much better than we do on our own.
Thank you again so much for your prayers for Daniel, Hannah, David and me. We need your prayers and care for us, and we appreciate it so much.