Thank you all for continuing to pray for Pierce's situation over the past 3 months. It has been a constant battle to find the best solution/surgeon for our boy, but we've felt so supported all along the way. Thank you!
Today we received a call from Pierce's new neurosurgeon. MRI results are in. Gulp.
- Pierce has a large, fluid filled cyst (this more than likely developed after the brain bleed. it is totally benign and just a result of the bleed.) in his 4th ventricle. This cyst is increasing in size at a moderate rate.
- Because of the size of the cyst, and given it's growth rate, it's important that we do some type of surgery in the next 3-4 weeks.
and now the good part:
- because of his anatomy (and your many answered prayers) and based on the location of the cyst, Pierce is considered a good candidate for the ETV procedure!!! They will need to fenestrate (open up) the cyst in addition to performing the ETV, but this means that once the cyst is gone, Pierce could very well no longer have hydrocephalus!
His surgeon isn't sure, but she feels like the cyst could be causing most of the blockage of his CSF. This is great news because it means that during surgery they will be able to remove Pierce's current shunt, thus making him shunt independent likely for the rest of his life!
While this is all WONDERFUL news, we still need your continued prayers.
Here is how you can best pray for us:
1. For guidance as to whether or not to travel to Boston for the surgery or to stay at Duke. Our surgeon at Duke fully supports us if we choose to take Pierce to Boston and is willing to do all of his post operative care here in NC.
2. For our consult with Dr. Warf at Boston. We are sending the scan to Dr. Warf for him to review and are hoping that he will agree with our current surgeon in that Pierce would be a good candidate. We should hear from him soon.
3. For health for Pierce during this pre-operative time. It's extremely important that Pierce continue to stay well before undergoing surgery. Please pray for protection against germs, especially as we've been at the therapy clinic every day this week.
4. We travel to Duke this Thursday to review surgical options. Now that we know that Pierce is a candidate for the ETV, the question now becomes whether to do the ETV now while his current shunt is still functioning well or to instead place a 4th ventricle catheter (an easier, less invasive procedure) and wait until his entire shunt system fails (statistically, this is almost guaranteed to happen within the next 1-3 years) and then perform the ETV/cyst fenestration/shunt removal surgery at that time. The biggest reason to go this route is that the older Pierce is at the time of the ETV, the higher success rate he statistically has. Ideally, his surgeon would like for him to be 5 years old at the time of the ETV to hopefully avoid doing any further surgery, but at 2 years old, he still has a decent shot of it working.After Thursday, we should know more about what each surgery entails and will hopefully be able to easily make a decision.
5. Please pray that after the cyst is removed, that Pierce would begin to make great strides in his balance and coordination/motor skills. His neurosurgeon feels sure that the enlarging cyst has played a role in Pierce's motor skill delay and we are all hoping that by removing this extra fluid, Pierce will begin to make greater strides in his PT/ABM sessions.
We are so excited and just feel so happy that God has answered our many prayers with a resounding "YES!" For 1.5 years, we've prayed almost nightly that God would provide a way for Pierce to have his shunt removed. Today has been a reminder that God has heard our many prayers and that, even though some have been answered with a "no" or a "not yet," still others have been answered with a miraculous "yes." Thank you all for joining us in praying.
We will update after our appointment on Thursday.