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.
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.
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!💜
So, we finally know what is wrong with Superman. He has pneumonia and they said it is really bad. Now get this he had an xray done every morning since November first and they are just now finding this out. The CT scan is how they found out it was pneumonia. He had a chest tube put in overnight to drain the infection. I’m glad to know he is not a mystery anymore. I’m, just wondering why it took so long to figure it out. No answer on that question though. He is doing a little better today. I hope he didn’t have this the first he was in here back in October because they never found a cause for temperatures then the just released him once the seizures were under control. Please continue to pray for my Superman. 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!