1.16.2013

Dr. Warf update

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!

17 comments:

  1. Read every word! And awesome! So glad you connected to Dr. Warf! I can believe you've never had a full MRI. That is shocking to me. I am now interested in doing a consult with Dr. Warf at some point (probably when they are saying Jack needs a revision). So glad you have this clarity and a game plan!

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  2. #4 is my vote and prayer for Pierce as well! So glad you have more clarity and an amazing opinion on board!! Praying for continued clarity AND healing!

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  3. Wonderful, my vote and prayer is for total healing apart from any need for medical intervention..agreeing with you all for the miracle that is Pierce.

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  4. Oh another thing I wanted to tell you is that Jack has very, very small ventricles and the pressure is turned all the way up, highest pressure, on both shunts. It's definitely a problem. I worry about brain growth all the time. Interestingly enough, no one seems to have any options for us regarding this. Maybe we need to schedule a consult with Dr. Warf sooner rather than later.

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    1. Yes, Dr. Warf discussed with us in great detail the severity of overdrained ventricles in a former preemie. He said older preemies (teens-young adults) who are shunted with normal to slit ventricles are his most complicated patients to treat. For that reason, he thinks shunting should be avoided as much as possible.

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  5. Read every word, and sad to say, understood all the way. Prayers continued as you travel this road with your precious little one.

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  6. Understood every word and all is very encouraging! Wishing you all the best in bringing the two teams together!

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  7. I think that contacting Dr. Warf sounds wonderful. We had to travel out of state to sort out some hearing issues and it has been well worth the extra time and effort.

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  8. So thankful for positive news and better options. I have been praying for you all!

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  9. O, Lindsay! So overwhelmed with all this wonderful news! Thankful for answered prayers and the wisdom Dr Warf was able to give you all. We'll be continuing to pray for wisdom for you and Nik and you proceed.

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  10. Will be continueing to pray for your miracle boy. God will continue to walk beside you all. WE are up here in Mass and we LOVE children's hospital so much. We have seen multiple specialist, unfortunately not neuro, but I am sure they are phenomenal too! If it is God's plan for you to come here, please contact me for anything that you could need help with, questions etc... Until then you are in my prayers

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  11. Ok, just caught up! Thanks for the details in the update so we know specifically how to pray! Glad you have some more clarity in the plan of action for your sweet guy!

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  12. I don't comment often but I follow little Pierce and pray for him. I like Dr. Warf and I think he is giving you excellent advice. Silly me, like I'd know, but there's always that gut feeling. I will continue to pray and look for good things to happen for all of you!

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