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.
Today is the first day I can say things are headed in the right direction. Superman got cleaned up by mommy today. We are having a family meeting Wednesday at 6:30. He is even starting look better finally. I have not been feeling good myself, been dealing with a toothache for some time now. It is finally starting to feel better. He looks so handsome with his hair spiked up. Thanks again for all the prayers and positive thoughts. Much love from Superman and his family.
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!💜
So this happened today. They had him on bed today that rotated to a standing position. He tolerated it pretty well, he was standing up for about 20 minutes. It looks like he has gotten taller to me. They also removed the second chest tube. He does still have to be suctioned regularly because he still has a lot of secretions. They want to talk to us about going to rehab and few other things. Thanks for all the prayers and positive thoughts. Superman sure appreciates everything.
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.