So we finally got a hospital bed for Dylan! I had to put it in my living room. So, Superman is still sleeping downstairs still but he is more comfortable now. A thank you to wonderful couple who donated it to us. He also got a nice little gift in the mail from someone special. He says thank you so much. Superman has not been feeling to good lately. I am asking for healing prayers for Superman. Thanks in advance.
Superman decided he didn’t like the tube down his nose anymore so he removed it. He is getting a break from it right now, but at five it has to be replaced for for his feeding. I hope it goes well, because he he getting back to his bad self again. I can say one thing, I’m proud of how hard he is working in therapy. Please keep the prayers and positive thoughts coming.
Superman says happy new year to all his fans and may you all have a blessed new year. He has been doing pretty good the past few days. We will probably be heading to rehab within the next week or so. Superman is going to Kennedy kreiger for rehab. I only plan on staying for 2 weeks that should give them plenty of time to do what they need to get him back to himself. Please continue pray and send positive thoughts and thanks for all the prayers!
Superman wants to say a big thank you for the wonderful donations that Michelle Belle collected to make our stay at the hospital more bearable. A big thank you to all that donated the wonderful gift cards, the parking passes, the check, snacks, and everything else. It is much appreciated. Please continue to pray for my Superman and send positive thoughts. Superman says thanks for all the love.
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 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 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.