
So this an article I found about necrotizing pneumonia. I was shown his CT scan today and it was not pretty. I still can’t believe how long it took them to diagnose him with this.

So this an article I found about necrotizing pneumonia. I was shown his CT scan today and it was not pretty. I still can’t believe how long it took them to diagnose him with this.
So, Superman is doing a little better. The good news is that his seizures are under control finally. They removed the continuous EEG yesterday. He had the continuous EEG on from October 31 to November 15. Now to recover from pneumonia. They put a chest tube in Tuesday night and it wasn’t draining much so last night they TPA in the chest to help break up the pocket of infection. I am hoping that does what it needs to do. If that didn’t work then the next step is surgery. My question still is why did it take 14 days to diagnose this pneumonia and no one can give a good enough answer why. Please continue to prayer and positive thoughts for my Superman Dylan! Thanks for the prayers and positive thoughts!💜

So, we finally know what is wrong with Superman. He has pneumonia and they said it is really bad. Now get this he had an xray done every morning since November first and they are just now finding this out. The CT scan is how they found out it was pneumonia. He had a chest tube put in overnight to drain the infection. I’m glad to know he is not a mystery anymore. I’m, just wondering why it took so long to figure it out. No answer on that question though. He is doing a little better today. I hope he didn’t have this the first he was in here back in October because they never found a cause for temperatures then the just released him once the seizures were under control. Please continue to pray for my Superman. Thanks for all the prayers and positive thoughts!💜

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!

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!

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.

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. ❤
