Today we had a little scare... I noticed P's incision was looking a little red and kind of gunky and it had been draining a bit. I put a call to the neurosurgeon's office and the NP felt it was a good idea to have him worked up. Because the drainage has been clear, she was very concerned that this was CSF (cerebral spinal fluid) leaking from his brain. This is very serious and would require surgery to repair the leak.
Thankfully we were able to speak with the Neurosurgery resident on call at Duke and he assured us that taking Pierce to our local ER would be an ok place to start to have him evaluated. Since Duke is 2.5 hrs away from us, we weren't thrilled about spending the day/night in the car, especially since P still struggles with occasional bouts of nausea and vomiting.
We took him into Levine Children's here in Charlotte and the doctors assured us that this was likely not a CSF leak, but more an incision issue. P is just way too happy and normal for it to be something serious. CSF leaks often cause serious spinal headaches and at this point, P just doesn't have the symptoms to fit the diagnosis. They assured us that they felt like we were ok to wait it out at home and unless something changes, just go to our regularly scheduled follow-up at Duke on Tuesday.
I am so thankful for their reassurance because the thought of a CSF leak was so, so scary! It's also nice to know that if we have any more doubts or questions, we can always take him back in.
P will still need to be monitored closely and if the incision continues to leak, we will have to go to Duke for further scans/tests, but at this point, all signs point to something minor as opposed to major.
We are going on a round of antibiotics to knock out any incision infection that may be present and are hoping that will be the end of this recovery!
Overall, Pierce is back to his happy self. He's still a bit more tired than usual, but is not requiring any regular pain meds (just 1-2x/day) and if you looked at him, you'd never know he had major surgery 10 days ago.
Thank you all for your continued prayers. Please pray that P in fact does not have a CSF leak and that his incision would clear up and heal quickly. Also, pray that his fourth ventricle is decreasing in size and that his brain stem and cerebellum are returning to a more normal position.