Extra Life Guild Member Shares His Story

Here is a blog post from one of our fabulous Guild Members with Extra Life, Dana Mikkelson.  Dana’s personal experience with Sanford Children’s Hospital motivates him to give back to local kids.

“It was an unseasonably warm day in the in October of 2016 and that day would change my families lives going forward. Ethan my youngest son had to run the ½ mile for his first grade PE class and after the run Ethan told his teacher that he did not feel good. He didn’t have a fever, but he was vomiting and very lethargic. The school nurse called and my wife picked him up from school and brought him home. After an hour of his symptoms continuing to get worse we decided to bring him in to the walk-in clinic.

Once at the walk-in clinic the nurses and doctors took his vitals and did some preliminary tests. Nothing showed out of the ordinary but they knew something was not right and requested an ambulance to take him to the emergency room. I was at my office so my wife called and told me the news. I met them at the ER and saw that my normally happy boy was in extreme pain. The nurse and doctors took several labs and then ordered he go in for a CT exam. It was at this point that we were all worried.

The doctor came back and his initial indication showed that Ethan had a cerebral hemorrhage and that they had called in a specialist to do an additional CT and determine the root cause. The pediatric neurologist examined the results from the second CT and found that Ethan had a AVM (Arterio-venous malformation in his right cerebral cortex that had formed an aneurysm and it had begun to bleed. This additional blood had caused the internal pressure of his skull to increase inducing extreme pain and lethargy.

We were very frightened by the news and an additional team of specialists were called in to perform emergency surgery to block the blood flow to the AVM and to remove the hematoma from his brain. That night several surgeries were performed first a trepanation and drain was installed to relieve the pressure on his brain and then a cerebral angiogram was performed to introduce an embolizing agent into the AVM to stop blood from flowing. The last surgery performed was a craniotomy to remove the hematoma from his brain, furthering the reduction in pressure. Ethan was in a chemically induce coma during this period and was moved to the pediatric intensive care unit to recover. After 2 days he began breathing on his own and the ventilator was removed. He woke up a very sore but hungry boy and requested some macaroni and cheese.

We stayed another 4-5 days in the PICU and then were moved to the pediatric unit where we stayed for another 5 days. After doing some testing and exercise he was cleared to go home. This was the very difficult but good beginning to a journey that would take a couple years. In the following months several more exams were performed and an additional angiogram was performed to further the blockage of blood as the AVM had begun to form new blood vessels. The doctor then recommended that we schedule another surgery in August of 2017. After the consultation of many experts the final recommendation was to do another craniotomy and surgically excise the AVM. We again spent a couple days in the PICU and then the pediatric unit and finally Ethan was cleared to go home. This time we got encouraging news from the surgeon Dr. Alex Drofa and his partner Dr. Evgueni Kouznetsov that all sign pointed to a full recovery and they did not want to see him again until 2024.

It’s never a great situation to be in when your child has a major medical issue but we are lucky to have such an amazing facility and such a great network of doctors, nurses, CNA’s, EMT’s and child life specialists. Everyone involved was fantastic and showed a level of care that surpassed my expectations. The EMT’s that delivered Ethan to the ER wanted to know what happened and even came up to the PICU to wish all of us a speedy recovery. It’s here where you can begin to appreciate the generous benefits of having a program such as Extra Life. It’s the work that all of those involved can provide for Child Life Specialists, special equipment, and facilities to help not only the patients but also the families. I had donated to Extra Life in the past but with this experience and some encouragement from those already involved I have become very involved with our local guild and spread the message daily! I hope that my personal experience gives you a perspective what your support and donations help to do. I want to personally thank all of you and I want to encourage anyone who has heard of Extra Life to get involved today!”

 

 Ethan, 2018

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