Scary Evening...

Yesterday, Reagan's day was relatively good. They have been weaning her on the vent and she has responded well to all of the new settings over the last 24-48 hrs. I truly think her lungs are in better shape than they were over the weekend. The plan is to try to extubate her later today, if not, by tomorrow.
In spite of her stable vitals she has continued to spike fevers since the weekend. She is on four different antibiotics to cover the H flu and enterobacter that we know she has as well as others just in case due to the continued fevers. Then, yesterday around 4:30 I was sitting by her bedside and she had what looked to be a seizure. Her eyes rolled back in her head and her arms and legs were tight and had resistance when I tried to move them. About an hour and a half later, she did the same thing. Each episode only lasted about 15 seconds and she went back to her normal "sleeping" immediately afterwards. In my fright from the situation, I began looking up meningitis symptoms because the H flu bug that she has can also cause meningitis. Many of the symptoms listed were ones Reagan has had (fevers, seizures, respiratory infections, and petechia (small purple spots in differnet area on her skin- mainly thorax and neck on Reagan). I then starting having my breakdown right there at the bedside. I'm usually one that breakdowns out of sight but with all the stress of the situation I let it all go right there in front of everyone. The docs were convening outside her room and called a neuro dr. in to let them know what was happening with her. We were told that the seizures could be related to coming off narcotics too quickly. They have had some cases here in the CVICU of kids having weird movements that concerned them enough to do a CT scan and all came out normal-- just sedation related. So, Reagan was given an extra dose of Ativan after her second episode. She then had a 3rd episode of stiffening her arms but did not roll her eyes back that time. The nurse and my mom said it was more like she was mad and fighting than a seizure. Overnight, she has not had anymore seizures and has been cognitive the times she does wake up. Neuro and Infectious Disease are now on Reagan's case just trying to figure out the high fevers and seizures. In the interim, the CVICU docs have upped her antibiotic coverage to include meningitis although they are not thinking that it is this at this point.
Today, is a big day aside from the fevers and seizures. Reagan is currently getting a PICC line put in so that once she's extubated and gets rid of her central and art lines we will have a way to administer her big gun antibiotics for whatever course they deem necessary. Also, she has significantly come down on her vent settings and is doing well. So, extubation is planned for today but probably not until later on. Also, there is talk of doing a CT scan of her chest to check to see if maybe these fevers might be an infection in her sternum as well as checking the brain for meningitis. The CT might happen today or possibly tomorrow. We are waiting for all the teams- CV, Neuro and Infectious Disease to come up with a definite plan.
All viral, urine and blood cultures have come back negative so far.
Thank you all for your prayers and I will update as often as I can.
Lastly, I want to thank my mom and Lonny for sitting up with Reagan last night so that I could get some sleep. Please pray they are able to catch up on their rest today.