On October 31st, he came down with a mild fever and chest congestion. It progressed to blurry vision and pain behind his eyes. He was taken to urgent care and to his primary care doctor, where it was determined that he was definitely fighting an infection, but they were unsure of what it was.
He slept for 3 days straight and would not wake up for food or water and on November 4th, he was taken back to the local ER for fluids and more tests. He was then transported to Seattle Children's Hospital.
On November 5th, he was moved to Pediatric ICU and underwent MRI testing that determined he had brain inflammation caused by a yet unknown autoimmune disease. He began steroid treatment to try and get the brain swelling under control.
At this time, he was able to talk a little, but had sadly informed us that his vision was completely gone. This is especially heartbreaking as Niko loves his video games so much.
On November 7th, we finally had a diagnosis... ADEM - Acute Disseminated Encephalomyelitis. A very rare autoimmune disease that causes inflammation of the brain and spinal cord and damages the myelin coating that protects the nerve fibers. Over the next few days, he became weaker and on November 9th he was sedated, placed on intubation to help with breathing and given a feeding tube.
On November 10th, Niko began IVIG - Plasma Exchange therapy, to try and rid his blood of any infection.
On November 17th, a 2nd MRI determined there was further brain swelling and we were told that his recovery could very likely take many, many months. Possibly even a full year or longer.
On November 18th, he was taken to Neurosurgery for a brain biopsy to determine that there was no evidence of any other infections. Luckily everything was determined to be normal within his diagnosis.
After a full month in PICU, on December 8th, Niko's vitals finally stabilized.
On December 11th, he was given a Tracheostomy for breathing, as it is much cleaner and safer than intubation.
On December 13th, Niko was finally moved from Pediatric ICU, to General Medicine and Recovery ward! This means the doctors no longer believe that he is in any danger of respiratory failure and beginning his long road to recovery!
On December 24th, he began Cytoxan, a chemotherapy treatment to fight his ADEM. Niko has taken many baby steps towards recovery since beginning his IVIG therapy, including opening his eyes when asked and responding to pain tests in all 4 extremities. He occasionally wiggles his toes and will squeeze your hand when holding his.
But we still have a very long road to recovery. He will likely be in the hospital for several more months and will require full time care when he gets home. While he does have health insurance, it doesn't cover everything. Even just $1 is a huge help.
Thank you for reading our story.