Shea made it through the surgery well... he's stable and sleeping heavily in PICU.
good news- because there was so much fluid leaking they actually found the defective dural site quickly and it was in the area in the lumbar spine they could access fairly easily. Huge sigh of relief.
bad news - it was easily found because the area that was not intact was about the size of a "female thumb." Also it was at the site of the nov 13th tear and repair, but wasn't a rip or tear now... it was a few small holes that they stitched and in general the dura had become dysfunctionally stretched and thin...so the cord was "sweating or weeping" fluid out of it. To repair this the best they could, a few sutures were used, and then 2 layers of a synthetic substance to help reinforce the dural sheath of the spinal cord. ( to take shea's brain out of danger when his shunt was in failure and relieve the pressure in his ventricles, the ETV was done...now pressure was better in the ventricles... and instead the pressure was more evenly dispersed into the dura of the spinal cord... the old dural tear repair site and the fragile nature of his dura from spina bifida and repeated surgeries could not take this new pressure, even though it was "normal pressure" )
Good news - the extra ventricular drain went in well through the same tract that the ETV scope had gone..no new pathways made through grey matter. He's talking well, has good memory, has good neuro checks and no decline in leg function.
Bad news - the soft tissue in the lumbar spine under the 2 sutures that had closed the leak last sunday was a "gaping hole" according to the surgeon. basically the skin and 2 sutures were protecting the spinal cord from the outside world and all of it's germs. The docs are very worried about infection, but so far he is not showing any signs, is getting loads of cultures and blood work and is on antibiotics.
Good news - the drain is taking lots of csf off of him to keep the pressure near the repaired dura as safe as possible. The manometer is set so that if any pressure rises above 5 it drains automatically, he is not clamped. ( before he was allowed to go up to 20, and if over 20 for 5 min they would manually drain ) now they are keeping pressures extra low to protect the repair.
He is required to lay flat for the next 48 hours, no raising the head of the bed. We are using a folded towel as a pillow, and he can log roll left to right. They are watching the dressing closely to see if he's leaking any csf. Late on Sunday if the leaking is absent, they will start to let him slowly sit up.
I'm thankful that this low pressure is not causing him headaches or nausea since it's a sudden change in the dynamics of his system... we hope that when he is allowed to sit up, this will continue to be the case.
If no infection and no leakage from the lumbar skin of csf, then on monday or tuesday they will implant the programmable shunt to keep his pressures extra low as they are now.
another piece of good news is that they could mostly visualize the orthopedic hardware that is left in the left lumbar spine and it's not lose or displaced. He will continue to wear his brace at all times if out of bed for the next few months.
we have goals,... and a plan... let's hope it's complication free. Thank you a million times over for all the prayers, encouragement, helps.... very humbling....and vitally needed.