πŸ’œUpdate on Superman Dylan!πŸ’œ

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.

Update on Superman Dylan!πŸ’œ

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.

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!πŸ’œ

πŸ’œUpdate on my Superman!πŸ’œ

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!

πŸ’œUpdate on Superman πŸ’œ

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!

Update on Superman!

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.

πŸ’œSuperman update!πŸ’œ

Superman was continuing to show seizures overnight so the started him on ketamine drip and versed to try and control them. It seems to be working. He is still not waking up. The neurology team is supposed to come talk me about the eeg findings. I hope it is some good because I sure could use some right. We have been here 8 days now and we still are playing the wait see game. I would like to thank everyone for all the prayers and positive. ❀

πŸ’œSuperman update!πŸ’œ

Dylan still hasn’t woke up from the pentibarital coma yet. His seizures are starting to slow down. He is now getting some nutrition through nd tube. We are just sitting here waiting for him to wake up. So maybe today will be the day he wakes up. Thanks for all the prayers and well wishes!! Please continue to pray for my Superman. now.https://m.facebook.com/story.php?story_fbid=2413099008706781&id=100000201167238

Superman update!πŸ’œπŸ’œ

Superman is slowly coming out of the sedation coma of pentobarbital his level today is 29. His eeg is showing lots of brain activity but it is still showing seizures. He is having ND tube placed today for feeding. Please continue to pray and send positive thoughts.