No scheduled therapies are planned over the weekend as it’s supposed to be a resting time from all the activities during the week. Seth’s neurostorms seems to be extra active in the mornings around 3-8am. We think that a large part may be some gut issues, so he had some labs (which were ok) and an abdominal x-ray which showed excessive amounts of gas throughout his intestines and we’re sure one source of pain. The doctor changed up his meds to align with a 6 & 8 hour schedule instead of 3 or 4 times a day- which if you think about it, are two different things. In Seth’s situation, 3 or 4 times a day meant pain, HR, BP, etc, medications between 5am-11pm but nothing from 12am to 5am. They will also try and only feed at regular meal times instead of continuous feed from 3pm-9am. Hopefully this will help the pattern of the rough mornings he’s had, which really affects the whole day.
Yesterday in PT, Seth moved his leg on command 10 times! Maybe he knew I wrote a couple days ago about his soccer trip to Colorado. A friend reminded me that even small miracles are big, so this is was awesome to see!
Thank you to those that keep reading our updates and keep praying fervently for Seth. Please pray specifically that the change in his meds schedule help his gut and decrease his neurostorms. Also, please thank God for the opportunity to be here at Craig Hospital for the best possible care.
~Darcy
Leave a Reply