πŸ’œUpdate on my Superman!πŸ’œ

Sitting here at John Hopkins hoping for some answers today about what is going on with Superman. He has a CT scan today at 1 hopefully this will give us some answers instead of the doctors all telling me he is a mystery they are trying solve. He ran a temperature of 103.8 all night. He is getting weird rashes on his arms and legs. His belly has been descended for a couple days. His medications have been increased. They have helped the seizures. But with the fevers I’m, afraid they return with a bang. Please continue to pray for my Superman! I would like to thank everyone for the prayers and positive thoughts!

πŸ’œUpdate on Superman πŸ’œ

So, Superman had his breathing tube removed today but it didn’t last too long they had to put it right back in because he wasn’t ready for it to come out. They took him off his rubinol which is for drooling. They put him back on it today. To help with all the secretions. They said they would try again in a couple days. We have been here since Halloween so that makes it twelve so far. I wish they figure something out. Especially what is causing the fevers. Still no explanation for them. They have done almost every test they can think of. They are calling him a mystery. I don’t know what to think about that. I wish they would figure something out and bring my Superman back to me. Please continue to pray and send positive thoughts. Thank you!

Update on Superman!

Superman is slowly coming out of the sedation coma! His poor body is all out whack. He has been given insulin because his sugar has been high. The medication take a toll on his body. Yesterday they had him on ketamine drip which raised his blood pressure, so they had to stop it. One good thing is his are stable for now. Hopefully they stay that way.

πŸ’œSuperman update!πŸ’œ

Dylan still hasn’t woke up from the pentibarital coma yet. His seizures are starting to slow down. He is now getting some nutrition through nd tube. We are just sitting here waiting for him to wake up. So maybe today will be the day he wakes up. Thanks for all the prayers and well wishes!! Please continue to pray for my Superman. now.https://m.facebook.com/story.php?story_fbid=2413099008706781&id=100000201167238

Another update on Superman!!!

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. πŸ’œ

Update on Superman!

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. πŸ’œ

Update on Superman!!

πŸ’œThe 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. πŸ’œ

Epilepsy is not a joke!!!

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.

Not good news!!!

Superman has to be put on a ventilator to help him breathe now. He is having hard time breathing because of the seizures medications he has been given to control them. They are placing a central line and al line for needed medication.

Superman did not have a good night!

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.