(This post is probably too long for most to read. But for us it is a way of remembering those few days, celebrating God’s provision in unexpected ways, being thankful for the time to bond and connect with our family and friends, and understanding crisis from a personal perspective. Zepheniah 3:17 was on our minds and lips:
“The Lord your God is with you, He is mighty to save. He will take great delight in you; He will quiet you with his love; He will rejoice over you with singing.”)
To Atlanta and Back
For those of you who follow our emailed ‘calendar’ of trainings, you probably know that we were scheduled for a 30 hour training in Atlanta, Georgia from April 10-April 13. As we prepared and grew excited for a training done by the ICISF on Crisis Intervention, we had planned out Samuel’s care while we were away to be split between the grandparents. We got to Atlanta on Wednesday night and were so blessed by the hospitality of our friend’s parents who lived just 20 minutes from the conference location. We had a wonderful few hours with them before going to sleep and being driven the next day to the conference location. We had just spent the morning learning about the nature of crisis and how the crisis has more to do with the response to an incident than the incident itself. As we heard first-hand stories from our trainer who is the founder of the ICISF and been on the ground for crisis intervention responses at 9-11, Newton shooting, Oklahoma City Bombing, etc, we were encouraged to hear of the ways in which people are supported so early and so well following a traumatic event. After lunch, we were sitting in the second session of the training, when I looked down at Tony’s phone and it said: “2-411.” Tony didn’t think much of it until I received a phone call directly afterwards: “2-411.”
I answered the phone as I walked out into the hallway. It was my father-in-law in a frantic state and I heard the words: “It’s Larry. Hospital. Samuel.” I responded with “What?” But Larry was too emotional to speak so a nurse came on the phone and briefed me: Sam had been taken to the local ER after having a seizure at home. And he had just had a second seizure at the hospital.” My mind raced with so many emotions and questions as I ran back in to get Tony out of the training. We listened on speaker phone as the nurse went over all of her information. Our hearts dropped and our eyes filled with tears as we were so far away from our sweetest little man during a crazy and unexpected time of uncertainty. We were so grateful for the care of my father-in-law as he did such an amazing job getting Samuel to the ER so quickly. We continued to hear the words from the nurse that felt like a foreign language: Febrile Seizures. Andavin. I could hardly utter the words but I asked: “Is it life or death?” And the nurse responded: “Samuel is stable. He is okay. We are trying to find what’s causing the seizures and getting testing done for RSV, Meningitus, etc to rule out possible causes.
Once I had enough information, I left Tony on the phone so I could begin calling a few friends from church that could either pray and/or go to the ER to support Larry as he was understandably shaken up. After those phone calls, our hearts shifted to: “How can we get back home?” We impatiently worked through automated message systems for various airlines before one person said: “We don’t have any flights today but US Airlines has a direct flight from Atlanta to Grand Rapids that leaves at 3:15pm. I knew right away: “We have to get on this flight.” Sure, we could get routed from Atlanta to Chicago to Detroit to wherever or wait to re-book our current tickets but if there was a flight that left in less than an hour to go directly to my son, we had to be on it. Somehow all of our attempts to keep our trip to Atlanta as budget-friendly as possible (Chicago to Atlanta flight, staying with friends, not renting a car, etc) went out the window as we booked our flights to Sam. We are so thankful for our amazing hosts who dropped everything to get our luggage from their house and come take us to the airport. We ran through the airport security and got to our flight gate just as they were boarding. It had been less than two hours since the phone call, and we were going home.
As fast as it was, it didn’t feel fast enough and yet, I can’t imagine having to wait any longer to get back to see our son. We passed the time by watching videos of Samuel dancing, laughing, and talking. Our greatest fear was: “Will Samuel be the same Samuel that we left?” We prayed that God would preserve his joy and curiosity for the world around him. By the time we got off the plane, we knew Samuel had had a 3rd seizure at Holland Hospital before being transferred to DeVos Children’s Hospital. We knew that a dear friend and member of our newly formed advocacy team from church was riding in the ambulance with Larry and Samuel. We were at the Children’s Hospital by 6pm on Thursday and walked into Samuel’s room to see 7 people in gowns surrounding our son. Three grandparents, one doctor, two residents, and a nurse – although my initial reaction to that many people standing around our small son was fear. After putting on the gown and mask as quickly as I could, I rushed to him and picked him up as he was seeming fussy and inconsolable. He went back and forth between Tony and I as we took turns trying to comfort and calm him. He quieted down on my shoulder and then finally fell asleep within minutes on Tony’s shoulder. With him sleeping peacefully in the safety of our arms, we could finally start to ask additional questions. More words: Complex Febrile Seizures. RSV positive. Cat Scan. MRI. EEG.
The care, nurses and doctors, at DeVos were wonderful. They gave us space and time to process and decompress and catch up with family and friends. Our pastor from Engedi joined us and prayed with us. More information came in. We learned that Samuel would start Keppra, a seizure medication, and be on it for the next few weeks. We learned that Samuel was going to be getting an MRI and spinal tap at 1:30 in the morning, since an anesthesiologist would already be coming in. After some sleep, we had to wake him for these procedures and hand him off to a doctor to put him under. As we waited, we were encouraged and prayed with another family in the waiting room. They were waiting for their daughter to finally be finished with a kidney transplant they had been waiting 2 years for. After Samuel came up out of the anesthesia, he had three crazy poops, then he was inconsolable and angry and tired. We finally managed to get him to sleep on Christen’s shoulder, where he spent the rest of the night.
Friday was challenging at first. We had to wake Samuel up for an EEG. But because we had let him get his sleep, he hadn’t had his Keppra in time. When we did wake him for the EEG, he had his fifth seizure — that was terrifying to watch. The seizures were “grand mal”, meaning his eyes rolled back, he was unresponsive, he went rigid, and his whole body started shaking. The EEG technician wasted no time after the seizure and immediately began applying the 25 or so electrodes to Samuel’s head while we had to hold him down. That was the worst experience… to not be able to comfort him but instead to hold him down for the next hour after his seizure. An hour later, the pediatric neurologist came in and gave us his thoughts: Samuel probably won’t have any long lasting effects from the seizures, these probably aren’t indicative of a seizure disorder, and are most likely due to a fever caused by various factors relating to the RSV. What he wasn’t able to answer, is why Samuel had 5 seizures, when febrile seizures usually only come once, maybe twice.
The rest of the day was challenging as Samuel was largely incoherent, barely ate or drank, and wouldn’t be soothed. We gave him as much sleep as we could. Both our parents were there the whole day and Tony’s brother Max, too. We appreciated their support and presence. The two dad’s actually drove over half-way to Chicago to pick up our car that we had left at the train station… so helpful! We had a more restful night with Samuel sleeping on Christen’s shoulder again, and had much more positive news in the morning. Samuel was acting much more himself again, and was even smiling a little. He was intrigued by the huge windows in the room as well as the inflatable duck and cow balloons his grandmas had bought him. I believe this was his first (not last!) morning to have chocolate milk :). We were given instructions on how to use a Diastat pen to inject Samuel with diazepam if he had any crazy long seizures at home. We picked up our prescriptions, and we were sent home around 3:30p. We arrived back to a clean home, thanks to friends and family, and got him to sleep pretty soon after that. That evening meant Thai food, a funny movie, and sleep for his parents.