Thank you to everyone who's prayed, texted, messaged us over the last few days (and weeks!). It's always so humbling to see how many care for us. Thank you!
Today was our big conference call with Dr. Warf, pediatric neurosurgeon at Boston Children's Hospital. And it went so well. Really, after talking with him, Nik and I have much clearer thoughts on how to proceed. We also feel like we have a better plan on next steps.
Dr. Warf truly is an amazing doctor. He spent time with us reviewing Pierce's scans and noting things that we've never heard before today.
Here's the quick run down:
#1. Dr. Warf strives to get/keep children shunt independent by treating them endoscopically. Unfortunately, we still do not know if Pierce is a candidate for the endoscopic treatment based on the fact that our local neurosurgeons have not gotten a full, formal MRI (up until this point, Pierce has just had quick MRI's to check the ventricle size, but a longer study would give them a better image of his anatomy, thus telling them if he truly is a candidate for surgery.) We were a little taken back by the fact that our local surgeons are asking us to make a decision based on little information. We were also disappointed that we didn't have everything needed to get a proper second opinion. Dr. Warf really felt like we need to get a full MRI before we can or should make any decisions.
#2 Dr. Warf was also "hard pressed" to find evidence of a trapped fourth ventricle, which basically means that the size of Pierce's fourth ventricle has increased so slightly that it was hard for him to tell based on the scans. He said that a main indicator is change in the appearance of the brain stem on MRIs and that Pierce's brainstem has been stable in appearance on all scans. All of this is good and means that surgery is not necessary in the immediate future and time is likely on our side.
#3. Once we do the formal MRI, we will be having another conference with Dr.Warf to discuss whether or not Pierce is a candidate for endoscopic surgery. He reassured us that the risks we were presented with from the previous surgeons, would be easy to predict/avoid and that he would not operate on Pierce if the MRI suggests it's risky. This is great news because that is our biggest concern with the ETV procedure.
#4. Furthermore, if we can treat Pierce endoscopically, Dr. Warf would remove his current shunt during the same surgery. If the ETV is successful, that would mean NO shunt for Pierce ever! It would likely also be Pierce's last surgery. Can I just say that's my vote?!
#5. If the MRI shows that Pierce is not a good candidate, our only option for treatment would be a fourth ventricle shunt. That being said, Dr. Warf stated that he does not recommend these as they have a high failure/malfunction rate AND (new news to us) they are difficult to correctly place. He stated that he's seen significant risks/negative outcomes from the brain damage done during the placement of these types of catheters. He also stated that he would never shunt a child who is not symptomatic. Based on our conversation we had, we've decided that a fourth ventricle shunt would be our last and final option for Pierce and would only be used if he were to become symptomatic.
#6. Dr.Warf also felt like Pierce was currently overshunted, meaning that his ventricles were too small. He said that in preemies with brain bleeds, there is often brain volume loss (because the blood and oxygen deprivation can cause their brains to have injury) and that these children can often tolerate (and in fact, need) more fluid than a "normal" child. He stated that overshunting can cause significant problems down the road for Pierce. To fix this, he recommended turning Pierce's shunt up, which would make it drain slower.
Still with me? Haha.
To summarize, we are headed back to our local surgeons on Monday to see if they will be willing to collaborate with Dr.Warf to get the proper scans, etc. After we have the formal MRI (hopefully done within 2-4 weeks), we will send it to Dr. Warf and hold another phone consult. That will give us a direct answer as to whether or not Pierce is even a candidate for the ETV. If he is, we are strongly considering traveling to Boston to see Dr.Warf because of his expertise. If he is not a candidate, we will likely discuss the options (basically to shunt or not to shunt), but will wait it out and pray Pierce never gets symptomatic enough to require another shunt.
Thanks for hanging with me through that medical jargon. :) And thank you for the prayers. I feel we have more clarity now than ever before.
Thank you for praying for our boy!