Look what finally came!

He finally got his go talk 4 the other day. Now we can work on getting him to Express himself. He didn’t want his picture taken as you can tell. At least he is smiling in the one picture. I am so happy he is finally feeling better as well.

Some cute pictures from Halloween!

Superman didn’t go trick or treating. He did have some fun at home though. His sister took some snapchat pictures of him. His brother carved a pumpkin in the Superman emblem. So, I can say he had better Halloween than last year he is not in the hospital.

A few pictures of Superman!

My Superman is growing up up to fast. I can’t believe how much he has changed. He is so handsome.

Dylan is sick!

Dylan is not feeling good today because we had to replace the ng tube over the weekend. Everytime we have to put the tube back in Superman ends up sick. He still has been refusing to cough. If we could get him to do that we probably wouldn’t have this problem everytime we replace th ng tube. Please keep him in your prayers and positive thoughts. Thank you in advance. He was resting last night with his niece Delilah. It was so adorable.

Stair lift

Superman finally got his stair lift installed today. They had me test it out to make it works properly. It goes up pretty quickly. This will help out a great deal with getting him to the shower. I’m not sure how he will feel about it though.

Update on my Superman!

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.

Not a good night!!!

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.

Update on Superman!

NP in children was first reported in children in 1994, and since then there has been a gradual increase in cases, which is partially explained by greater physician awareness and use of contrast computed tomography (CT) scans, and by temporal changes in circulating respiratory pathogens and antibiotic prescribing. The most common pathogens detected in children with NP are pneumococci and Staphylococcus aureus. The underlying disease mechanisms are poorly understood, but likely relate to multiple host susceptibility and bacterial virulence factors, with viral–bacterial interactions also possibly having a role. Most cases are in previously healthy young children who, despite adequate antibiotic therapy for bacterial pneumonia, remain febrile and unwell. Many also have evidence of pleural effusion, empyema, or pyopneumothorax, which has undergone drainage or surgical intervention without clinical improvement. The diagnosis is generally made by chest imaging, with CT scans being the most sensitive, showing loss of normal pulmonary architecture, decreased parenchymal enhancement and multiple thin-walled cavities. Blood culture and culture and molecular testing of pleural fluid provide a microbiologic diagnosis in as many as 50% of cases. Prolonged antibiotics, draining pleural fluid and gas that causes mass effects, and maintaining ventilation, circulation, nutrition, fluid, and electrolyte balance are critical components of therapy. Despite its serious nature, death is uncommon, with good clinical, radiographic and functional recovery achieved in the 5–6 months following diagnosis. Increased knowledge of NP’s pathogenesis will assist more rapid diagnosis and improve treatment and, ultimately, prevention.

So this an article I found about necrotizing pneumonia. I was shown his CT scan today and it was not pretty. I still can’t believe how long it took them to diagnose him with this.

Superman update!

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!💜

💜Update on Superman 💜

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!