November 7th, 2017 — (25 days since leaving the hospital).
On the FIRES Group Facebook page yesterday, an obituary was posted of a 16-year-old boy in Minnesota who didn’t make it out of the ICU. He fought his seizures for 8 weeks before succumbing. Life is so fragile. May the Lord bless his family.
August 7th, 2017 — Drew was having nearly constant seizures, including a myoclonic seizure involving his right leg and torso that lasted for more than 2 hours. He was barely moving his right elbow and hand, mostly when he would cough, and he was unable to follow any commands or really interact. The plasmapharesis had finished two days earlier seemingly without any improvement, so after another Care Conference, Anakinra was started in the afternoon.
November 7th, 2017 — three months later.
A special thank you to the Theater Department at Copper Hills High School — to all the cast, crew, and Admin — for working Drew into the Musical this past week. He has wished to be in the musical pretty much since he woke up from his coma and seizures, and over this past week, Drew has attended rehearsals to try and increase his endurance and strength. After his first rehearsal last Thursday, he was only able to last for about two hours and then he came home and went directly to the couch and fell asleep for an hour.
Unfortunately, he was not able to adequately learn any of the songs in time and his strength and balance will not allow him to do much dancing, but at least he will get to be on stage for a few scenes this coming November 10th, 11th, and 13th. He spent weeks with his mother and the Music Therapy at Primary Children’s, but his brain still cannot connect the words to the notes and rhythm very well. He may not have been able to try out for one of the lead roles, but we are so blessed to see Drew return to one of his passions, even in a limited role. However, considering he was in a coma with uncontrolled seizures three months ago, we are extremely grateful.
Sensory Processing Disorder
Drew’s biggest challenges continue to be his brain’s ability to process the incoming signals from all of his senses. We visited the eye doctor, and they were able to measure his vision is still 20/20, but his brain struggles to see what his eyes are seeing. Same with his ears, balance, and sense of touch/hot/pain. At times, he will dry his hands repeatedly because he thinks they feel wet, but in reality, they are dry but cold. When his brain gets tired, it has a more difficult time processing the incoming signals. This is especially apparent when he tries to recognize and remember people’s names. As a result, he still has a hard time watching TV and cannot listen or recognize any songs on his phone or the radio, but hopefully in time these will all continue to improve.
For the initial two weeks he was home from the hospital, Drew spent most of the day in his wheelchair. Gradually, he has built his strength and improved his balance to the point where he has not used his wheelchair in nearly two weeks. He is still unsteady and needs to have someone to lean on, but he continues to make gains. His memory and cognition have improved since the hospital, and he has been able to even remember how to do some algebra, but not yet ready for AP calculus. He started home school this week with the hopes of being able to return to school by January if his doctors and teachers feel he is ready.
The doctors also continue to slowly decrease some of Drew’s seizure medicines so that he is not so sedated and sleepy. Drew left the hospital on 6 seizure medicines and by the end of this week he will be down to 5 medicines. The first week home from the hospital, he was so sedated it took forever to do anything and everything and we spent most of the day just trying to get simple tasks finished. Now he still takes about an hour-long nap after his morning medicines kick in, but then he plugs through the rest of the day as best he can. The doctors hope to get him down to 3 or fewer seizure medicines so long as the seizures remain controlled, but they plan to go very, very slowly.
My apologies that this is more telling than showing and the update is brief. The last few weeks have been extremely busy and exhausting as we transition to home and help Drew continue to get strong(er). Again, we are grateful for all the prayers and support. With time, hopefully his brain will continue to heal and seizures will stay away so that he can return to school and choir and basketball and future musicals and plays. Until the next update, thank you and perhaps we will see you this weekend at the Copper Hills High School production of “My Fair Lady.”
© Copyright 2017 Jeff, All rights Reserved. Written For: Jeffrey Olsen