They took him off pentibarital drip to give his brain a rest at 3:00 am. His eeg is showing small spikes of brain activity. They say some of the spikes are still showing seizures. They raised his Onfi to 7.5 ml twice a day.We talked about the Epidiolex. They said we would have to talk about this at his neurology appointment on November 13. Please continue to pray for Superman. Thanks for all the prayers and positive thoughts. 💜
💜The MRI showed nothing remarkable. The cspine exray showed nothing as well. I am thinking it is just the epilepsy kicking his butt right. But, I know my Superman is warrior and he will fight this and win!! I will update again later. I want thank everyone for the prayers and positive thoughts. Please continue to pray for Superman. 💜
The Lombard puncture showed no sign of infection. Today the plan is to wean him down on the phenobarbital so he can start showing some brain function. Also his is going to have an MRI at some point today. Please keep the prayers coming because my Superman needs all the prayers he can get. Thanks to everyone for all the prayers and positive thoughts.
They have in a sedative coma to keep the seizures under control. They also told me it is to give his brain a rest. Remember he came to hospital in sub clinical status. The plan for today he may have an MRI not sure about that yet. I will let everyone know more later. Thanks for all the prayers and positive vibes.💜💜
For anyone who thinks epilepsy is a joke. This is proof that it is not a joke. Superman needs prayers right now. So please continue to pray for him.
He did not have good night. He seized all night in his sleep. He is so many different medications right now. Hopefully they start to work on him. So they don’t have to put him on a ventilator.
He is in sub clinical status right now. That means he is having seizures but you can’t see them.
So, Superman spiked 102 fever early this morning. Now he has to have bloodwork and cultures done again maybe they will find something this time. My poor guy looks so sad. I hope they can figure out what is going on with my superman so he can go home. Thanks for all the prayers and well wishes. Not to mention that we are working on day 10 in the hospital. I am one tired mom. I just want to know what is going on with my Superman.
My baby is not having a good day. The seizures are back to back to back again!
Superman had a 4-hour EEG Friday. It was fun trying to keep him from pulling the electrodes off his head. We will have the results in 2 to 3 weeks. He also started a new medication on Sunday. The medication is called Onfi. So far the side effects have been mild.
thetruesuperman 