We're a little over 8 weeks from Pierce's big surgery and went yesterday to Duke for a routine follow up scan and check up. To our surprise the scan revealed that Pierce's ventricles (all 4 of them) have all increased in size, indicative of a shunt malfunction. It also appears (though we're not certain) that the 4th ventricle cyst may have healed up following surgery (this is not good and what we were hoping would not happen).
This news is pretty devastating to all of us. We are heartbroken to know that Pierce likely faces another surgery on Monday.But we are thankful to report that Pierce is happy and thriving. He remains clinically unsymptomatic, which is very good. It also makes the decision to do proactive surgery (operating before he becomes symtompatic) somewhat difficult.
Our surgeon's (and our) hope is that Pierce's shunt was not on the right setting and that this caused his ventricles to swell (because the shunt was draining to slowly). To rule this scenario out, she adjusted Pierce's shunt all the way down to drain at the fastest level. If the ventricles have gone down on the repeat scan, we will know the shunt is still working and that it just wasn't on the right setting.
As of now this is the plan: to travel back to Duke on Monday morning for a sedated, detailed MRI (yesterday's scan was just a rapid MRI). We will go with the expectation that he will likely be having surgery following the scan (same day). At this point, if the shunt is broken, the surgery would include a shunt revision and then to address the 4th ventricle post-op enlargement, possibly inserting a 4th ventricle shunt catheter, thus giving Pierce a complicated shunt system... the very thing we were trying so hard to avoid by going through with the most invasive surgical option. It is also the shunt system that has a 85% chance of failure in the first year (which means Pierce is likely going to need repeat surgeries frequently).
Would you please be praying for our family? We are so sad that this surgery might mean Pierce will miss a trip to the beach that we've been talking about all week. (He's so excited to see the water!) And we are sad that this means our already traumatized child will endure even more pain, pokes and prods in a hospital.
But we are thankful. Thankful for our amazing surgeon at Duke, who sat with us yesterday, crying as she delivered the news. We are thankful that God has given man such wisdom in treating conditions like hydrocephalus.
Here is how you can pray specifically:
1. Pray for wisdom. At this time our biggest decision will be deciding whether to treat a shunt malfunction if Pierce remains asymptomatic. Our hope is that this is the time our surgeon can remove his shunt and attempt an ETV procedure, and she's willing to try but will need to make that determination during surgery when she visually sees his anatomy.
2. Pray that Pierce would remain asymptomatic as to allow for easier travel to and from Duke since we are 2.5 hours away
3. Finally, our hope would be that this is all just related to Pierce's shunt being on the wrong setting (this can happen as Ipads, Iphones, Microwaves, etc. have been known to reset shunts) and that the scan would look significantly better on Monday. Please join us in praying that God would grant our requests to avoid another surgery.