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!💜
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.
We are now on day 25 since Superman was admitted to John Hopkins. Today is the first day he has been in a chair since being here. He still sounds really congested. They do breathing treatments four times a day and suctioning him out regularly. He was supposed to go down to IR to have a procedure done yesterday but they couldn’t fit him in. So he is suppose to go Monday. Hopefully they don’t cancel it again. He is still really week. Please continue to pray and send positive thoughts. Thanks all the prayers and positive thoughts. 💜
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.
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!💜
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.
thetruesuperman 