Tag: abysmal

💜Update on Superman Dylan!💜

They took him off the ventilator yesterday, it was hard to watch him at first because he was choking and gagging a lot. He is doing much better today. Physical therapy came today and had him sitting up on the side of the bed first time in 21 days, he was getting tired from it. So he is resting now. He did have a fever overnight. So far today he hasn’t had fever. His blood pressure was a little low overnight. Baby steps but he his headed in the right direction. The chest Xray shows some improvement on in his lungs, but he still has ways to go. He has been doing a lot of wheezing today. I have been suctioning him a lot today, it is bring a lot of the junk up from his chest. He was happy to see you balls today but he didn’t grab for them yet. I think the chest tube is to painful for him to reach.

Update on Superman Dylan!💜

So, Superman had another CT scan yesterday and it is showing improvement. We came in the hospital for his seizures and ended up with necrotizing pneumonia. Which took them 12 days to diagnose. It is going to take awhile for him to heal. We are already going to spend Thanksgiving in the hospital. He has not been comfortable for the past 2 days. I think he wants the breathing tube out his throat. It must be getting uncomfortable since he has had it in for 20 days now. He is my baby and is still in need of prayers and positive vibes.

Superman update!

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!💜

Update on Superman!!

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!💜

💜Update on my Superman!💜

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!

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.

💜Superman update!💜

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 update!💜

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

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. 💜

Update on Superman!!

💜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. 💜