We're back from our appointment with Pierce's neurosurgeon. Unfortunately we were still given the choice of choosing between 2 options, and even now have a 3rd option. (This doesn't make things easier when trying to decide.)
Pierce's surgeon feels like we could try the aqueductoplasty and ETV procedure (endoscopic), but we'd first have to turn up his shunt and cause his ventricles to swell. He thinks it's a long shot, but could have the most benefit in the long run if it works, because it would make Pierce shunt independent. However, this procedure is far more complicated and riskier to Pierce. The main risk is that he'd have paralysis in his eye, though the doctor could not tell me how big of a risk that is because they don't usually treat kids this way. The other risks are the fact that we'd be inducing hydrocephalus again (by turning his shunt up) and there's no way to predict how Pierce would handle this (it could cause extreme headaches, vomiting and intracranial pressure).
Of course, option 2 is to place another shunt. The surgery itself would be easy and straightforward, but long term, it almost guarantees more surgeries for Pierce. Having a complicated shunt system is not ideal and carries with it long term risks of infections (meningitis), and shunt malfunction.
We told Pierce's surgeon we were seeking Dr. Warf's opinion and he was open to hearing his input.
At this point, we will wait to do anything until we've had our consultation with Dr. Warf from Boston Children's Hospital. We really feel like this is the next step for us as neither doctor here can offer us a solution we feel comfortable with.
Fortunately, Pierce's fourth ventricle has not swollen significantly in the past 7 months. It's very enlarged and has always been, but does not seem to be rapidly increasing in size. This means that time is likely on our side. No one can say for sure when or even if Pierce will ever become symptomatic and this makes developing a treatment plan more difficult.
That brings me to the third option: do nothing. Because Pierce isn't symptomatic, we could wait and see if he ever becomes symptomatic before treating him. While Pierce does have balance problems, it's hard to say whether or not they're a result of his earlier brain bleed or from this new problem. The surgeon today said he does feel like this needs to be treated at some point, but it is not urgent. We are just thankful we have more time to search for the best option for Pierce.
We trust that God has led us to Dr. Warf for his opinion and are hoping that he will be able to bring more clarity and wisdom to this situation. Our consultation (via telemedicine) will be on Wednesday, January 16th. Please continue praying that both the surgeons involved and us would have wisdom and guidance on the best solution for Pierce.
Also, while you're praying for Pierce, would you please pray for our friend Bella? Bella is a former 24 weeker who had a bleed almost identical to Pierce's. She was treated with the ETV instead of a shunt and is going tomorrow for a MRI as they think her ETV has failed. She has surgery scheduled for this Thursday and until they see the MRI, they won't know for sure what surgery she will be having-- shunt placement or ETV. Please pray for her and for her family as this is a scary time for them. Her mom, Becky has been such a dear friend and we've spent many hours on Skype swapping stories/experiences/tears.
Many thanks for your continued prayers!