Superman received more Christmas cards today! He also was given two Christmas trees, the one tree is a super hero themed and the other one is a baby Shark tree. I thought maybe Destiny could use at her baby shower. I also got a treat myself yesterday in the form of a massage. It was really relaxing. He is starting to move forward again. Please continue to pray for Superman and send out positive thoughts. Thanks for the cards and prayers.
So Superman is running a fever again. The seizures are back again. They are not sure what is going on now. Running a lot of tests again. So, Thursday or Friday afternoon when he was getting his deep suctioning he aspirated and they think that might be the cause of the fever. They are trying to get the ball rolling to get him on the epidiolex the cbd approved medication. Oh not mention his room was moved again. Once again I am asking for prayers and positive thoughts. Thanks for all the love for my Superman.
So Superman has been receiving Christmas cards. They only check the mail once a week. But yesterday he received a present from someone and it was a special gift. Thank you so much you know who you are. Superman loves it. I will post more pictures later with his gift when he is more awake. They had to up his seizure medications again and now all he wants to do is sleep. Thanks to everyone who has sent cards also thanks for all the prayers and well wishes. He is continuing to make progress.
So, Superman is still in John Hopkins. His seizures started to increase again, that means more test. He had 26 seizures yesterday. They are still talking about rehab, I am not real happy about that we have been here 42 days now. It sure would be nice to be home for Christmas but that doesn’t look like it’s going to happen.
Superman Dylan would like to thank everyone for the wonderful get well cards and Christmas cards. He is sitting up in a chair today, but he still managed to find away to get them legs up. Oh yeah, not mention we are now on day 31 at John Hopkins picu. Thanks again for the prayers and positive thoughts! Superman loves you!💜
Superman is starting to get back to himself. He went down to IR yesterday and had another chest tube put in his right lung so that makes two chest tubes now. They are supposed to remove the first one sometime today. He was up most of the night coughing up secretions and being suctioned through a nasal trumpet. He has been having a few more seizures, they only last about 30 seconds. He sounds horrible. I still dont get how long it took to diagnose him with necrotizing pneumonia. I want everyone for all the prayers and positive thoughts. Please continue to pray and send positive thoughts.
Superman had a rough night. His blood pressure kept dropping down to 70/30 they had put him back on the norepinephrine to help with that. He is also on the c- pap instead of the nasal cannula. He has been resting most of the morning. Oh yeah that’s right it is Thanksgiving, Happy Thanksgiving everyone from Superman at John Hopkins. Please continue to pray for my Superman and thanks for all the prayers and positive thoughts.
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.
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!💜
thetruesuperman 