Parent Blog: Michelle Hinrichs
In their words
In early 2015, our son Emmett experienced small seizures (one a month January through early March) that were unable to be diagnosed. However, on March 16, 2016 Emmett had a total of seven seizures in just one day. We went to our local hospital and were transferred to University of Iowa Stead Family Children’s Hospital, where we would stay for a total of four days and Emmett would experience a total of 20 seizures.
It was the scariest time of our lives. Going from having a healthy 5 1/2-month-old to a baby that couldn’t even be awake 15 minutes before experiencing a seizure was a very hard time. We didn’t know if we would ever see our baby normal again, if he would remember us, or if he would even be able to crawl again. After various tests (MRI and ET Scan) the results were inconclusive on why the seizures were happening. Today we still do not know why they occurred. He was placed on Keppra and has been on the same medication for over two years. We have had various check-ups throughout the last couple years and we have really built a connection and loyalty to UI Stead Family Children’s Hospital for their quality care of Emmett. On May 6, 2018 he reached the milestone of two years seizure-free! Today we met with his doctor who has been alongside him throughout this journey (Dr. Ioanna Kouri) and went through the needed steps to begin his weaning process. We are now at the stage where we hope to win this battle and that we never see another seizure again. We have faith that he will succeed and are so appreciative for the care he has received and the small acts of kindness that got us through this journey!
Our experience, beginning with that first day of March 16, 2016, has been nothing less than extraordinary. When we first arrived completely afraid and overwhelmed the nursing staff in the NICU brought calm to our internal storm. I remember our nurse Holly brought us down to the MRI and we were a nervous wreck – she even offered to buy us a pop or grab us something to eat knowing how exhausted we were. Even the smallest form of grace just meant so much to us. One night when I couldn’t sleep in fear of what was to come, our nurse Randy stayed with me for a while and talked to me like a normal human being. The smallest form of normalcy helped me feel human again. Then Dr. Kouri, she has been a godsend to us. Her commitment to her patients is amazing! I remember in May 2016 when Emmett had his last seizure at home I called the pediatric neurology phone number and we received a call in less than 30 minutes directly from Dr. Kouri. To know that we were cared for that much just meant so much to us! We knew Emmett was in great hands! Throughout the last two years we have looked forward to our visits with Dr. Kouri, she makes me feel like no question is a stupid question and she is always excited to see Emmett and our family. She has been our support system, our calm, our rock through this process. To know our son’s well-being was always No. 1 was everything to us!
UI Stead Family Children’s Hospital treats you like family, that your children’s well-being is just as important to the doctors as it is to you. Every time we have been there, whether in the NICU or the specialty clinic, we have been greeted with smiles. We will forever be grateful to the staff that made the most trying experience of our lives a hopeful and humbling one.