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.
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 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.
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!
They took him off pentibarital drip to give his brain a rest at 3:00 am. His eeg is showing small spikes of brain activity. They say some of the spikes are still showing seizures. They raised his Onfi to 7.5 ml twice a day.We talked about the Epidiolex. They said we would have to talk about this at his neurology appointment on November 13. Please continue to pray for Superman. Thanks for all the prayers and positive thoughts. 💜
My Superman is always hungry you feed him his dinner and he will be hungry five minutes later. So, the kitty came to sit with him yesterday and I guess he thought the kitty was food. He tried to grab the kitty and eat him.
We had a surprise party for Jeff it was his 50th Birthday. He received a few joke gifts. One was a cane filled with different things on Superman posed with the glasses from the cane.
So, we got a little kitty and he has become Dylan’s little buddy. His name is Dexter Morgan King after the show Dexter my daughter named him. Dylan seems to like him.
So Snap-chat had superman filter and Dylan had some fun with it. Now he is the real Superman!!!!!!!!!!!!
So snap-chat had a superman filter!
thetruesuperman 