Thanks for all the wonderful cards and ornaments from marley middle school and the Acc classroom. Also a big thank you to Drink at the well for the Christmas card. Superman is doing okay today. He was having some problems with dstating this morning when the removed the bypap this morning. So they put him back on it. Thank you all for the prayers and positive thoughts. Please continue to pray for my Superman. Merry Christmas eve to everyone. I hope everyone has a wonderful Christmas tomorrow.
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.
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.
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. 💜
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.
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.
thetruesuperman 