Sunday morning we arrived to Max having seizures. They were minor, started in his right arm and eyelids then into his left arm. We don't really know what is causing them. They didn't think they were epileptic in nature. Could be due to infection (that they still don't know is there), the fever, or his lack of sleep. From Thursday to Sunday they never noticed a good sleep pattern for him. They gave him some phenobarbytol to help, and it did for a while. Between Sunday and Monday he got three doses of phenobarbytol, which is the maximum he could get, and the seizures were still breaking through. As of this morning (monday) they are currently performing an EEG, which of course he has not had a seizure to show them. They are going to get an MRI as well.
His blood cultures, spinal fluid, and respiratory aspirate are all still negative for bacterial infection...the one blood culture that came up positive has been confirmed as Staph. campi, and a contaminant. They have sent in cultures for PCR multiplex to test for viral infections.
As the doctor has explained to us this morning, he is presenting signs for sepsis. He is negative for bacterial infection, so it may still be viral, and all they can do at that point is supportive therapy, until the infection is gone.
Wouldn't you know it, as soon as they started taking off the EEG buttons he had a seizure, that's my boy.
They are trying to schedule our group meeting for Wednesday. Doug and I have requested as much of his records as are available. We want to put together a time line of events for him, and a list of questions to ask the doctors. If anyone has any ideas/questions/thoughts please feel free to let us know. As many minds as we can get on this we would like!
Kerri I am so sorry to hear he has hit a bump in the road. Your little man has made it through so much he will fight through this. Being that they think he is sepsis have they added any other respirotory suppot? Keegan was sepsis...gram positive and they gave him extra support on the vent and gave him nitrick oxide which they said would take some of the work away from him. I am sure the seizures have to do with the high fever and possible being sepsis. Have you asked them to provide another type of sedative.....the longer he is awake the more worn down is poor body is....sleep is the best thing. You may want to ask them to perscribe something that will be more effective for him. Keep this posted I check on him all the time.
ReplyDeleteHello!
ReplyDeleteIt was so good seeing you guys today. Max is so precious and I pray everyday for him to get well. BTW he looks so so much like Gunner its super cute! But anywhoo, I just wanted to let you know that at CMH we have a unique way of "patting each other on the back" when it's a job well done. After what I saw today I wanted to give Becky and her team a pat on the back, here is what I wrote...
"My baby cousin has been in the ICN since 2 days after he was born, which puts us at 3 months now. I just want to extend a very big thank you to all the nurses who have been looking after him. Today, especially, I witnessed great care and compassion as 3 nurses including Becky Felix moved my fragile cousin into his father's arms for the first time in weeks. Their extraordinary attention detail and ability to apply all of our values in the most precarious of circumstances was amazing to witness. I truly appreciate all of them and I know my family does too. Thank you so much!"
You guys have some great nurses there, let me know if you need anything.
~Cousin Katie