Superman was continuing to show seizures overnight so the started him on ketamine drip and versed to try and control them. It seems to be working. He is still not waking up. The neurology team is supposed to come talk me about the eeg findings. I hope it is some good because I sure could use some right. We have been here 8 days now and we still are playing the wait see game. I would like to thank everyone for all the prayers and positive. ❤
Superman is slowly coming out of the sedation coma of pentobarbital his level today is 29. His eeg is showing lots of brain activity but it is still showing seizures. He is having ND tube placed today for feeding. Please continue to pray and send positive thoughts.
He is starting show signs of waking up. His right pupil is responding to light finally. His left pupil is still a little dilated from them checking his eyes to make sure it wasn’t bleeding behind it. He has been having spikes on the eeg but they still seem to be seizure activity. I will know more once neurology team does rounds. One again thanks for all the prayers and positive thoughts. I just ask for continued prayers and positive thoughts. 💜
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 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.
My baby is not having a good day. The seizures are back to back to back again!
He has infection going on somewhere just don’t from where yet. 102.00 fever overnight again. Blood pressure still low. His seizures are under control though.
So his sister came home with Dunkin Donuts coffee the other day and Superman always attacks her for it. He loves his coffee. This is the result of him drinking coffee.
Dylan got the superman hat for Christmas and he got the new Maraca. It is hard to buy stuff for Dylan because he has different needs then most children his age. He likes to spin stuff, like the old house phone he loves play with.
So yesterday Superman went to the hospital from school because they said he had a seizure that lasted longer then 5 minutes. They also gave him his rescue meds that’s another reason why he was taken to the hospital so he could be monitored. The hospital that he was taken to I’m not a fan of at all because of past issue’s. I have to say they gave him outstounding care yesterday.
Taken while at the hospital.
thetruesuperman 