1.03.2013

Neuro update pt.1

Today we had our first big neuro appointment. This time, we met with a new surgeon (same practice).

Here's the basic rundown (I'll omit the neuro babble that 98% of our readers wouldn't care to know anyways):
1. We have 2 options:
    a) We can go with the traditional shunting approach that Pierce's current surgeon has already recommended. This would mean that they would place a second shunt cathether into Pierce's fourth ventricle and convert his shunt into a Y-connection. The surgeon today said that this is the conventional method for treating a trapped fourth ventricle and that 80% of neurosurgeons would want to treat Pierce in this regard. However, shunting carries with it a 40-50% chance of failure and infections, malfunctions. Fourth ventricle shunts are notorious problem makers.
   b) We can go with a more aggressive, endoscopic procedure that has a chance (about 50% by his calculation) of allowing Pierce to live independent of a shunt. This procedure carries more risks during the actual surgery as it is far more complicated and complex. But in the long run, the risks to Pierce are significantly decreased because he will no longer be shunt dependent.

2. The basic summary from today was that although we have 2 options, neither one is a sure fix. Both surgeons are recommending different treatments, but both agree that something must be done to treat this. The fourth ventricle shunt has a high chance of shunt failure within the first year. The endoscopic procedure carries more risks for Pierce (chance of damage to certain parts of the brain during surgery) and only has about a 50% chance of working, meaning Pierce would then have to have a shunt placed. But long term, the endoscopic procedure, if it works, could provide Pierce with the best quality of life (no shunt revisions, infections, etc.). With either procedure, Pierce has about a 50% chance of needing another brain surgery within the first year. In the surgeon's words, "it's really just a coin toss." Thank goodness we know that our God is Sovereign.

Perhaps the best part of today's appointment was the fact that the two surgeons are going to have a conference meeting to discuss and plan what would be best for Pierce. They are both recommending something different at this point, and that is very difficult.

We would really, really appreciate your continued prayers as this is not an easy situation for us. How do you decide between two brilliant neurosurgeons? How do you know when to seek a third opinion?

We go back on Tuesday to meet with the surgeon and hear what they've come up with in terms of a plan. Please, please pray that God grants both men wisdom as they review Pierce's case. Pray that God gives Nik and I wisdom as we ultimately have to decide which approach to go with.

Most importantly, I'd like to pray, and ask all of you to pray, that God would supernaturally intervene and heal Pierce's brain and that no surgery would be needed. I know it's a bold prayer to pray, but I strongly believe that we should ask, knowing that whatever the outcome, God is at work to make all things work together for ours and Pierce's good. This, after all won't be the first bold prayer we've prayed over Pierce :)

Thank you for the many prayers you've already said. Please continue and ask others to join us in praying for Pierce.
Pierce was happy to leave the neuro office today.  The combination of strangers, tables with white paper, and white coats made him a hot mess! Lets just say he screamed every time the neurosurgeon even glanced his way.


With love,
The Franks Family

22 comments:

  1. Praying for all of you!

    "And we know that God causes everything to work together for the good of those who love God and are called according to his purpose for them."

    Romans 8:28

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  2. He is in my prayers Lindsay! Nothing is to hard for God! Pierce is so precious and so brave!!!!!!

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  3. We will continue praying for Pierce! Your family has never left our minds! Pierce is such a miracle, there is no doubt that his future is going to be great - he will get exactly what he needs to meet that wonderful future ahead of him!!!
    Lots of love to you guys,
    Natalie, John, Jack and Ewan

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  4. My son does that at the regular pediatrician! I don't blame him. Praying for you all and an obvious answer.

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  5. Praying for healing, no surgery, wisdom for the docs and for you guys!

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  6. My heart is so heavy for you and Nik. I will be praying that bold pray right along side of you!

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  7. I am just reading your story for the first time tonight and will remember and lift your sweet son and entire family up in prayer. As a Pediatric OT, Pierce is a true miracle and blessing. He has overcome many obstacles, and I know that he will continue to amaze you. Remember Jeremiah 29:11.

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  8. Thinking of you all as you make this decision Lindsay and Nik.

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  9. We too have prayed big prayers like that! And we are doing that for Pierce. And for you- to have wisdom and discernment in making those
    decisions. :)

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  10. I am so sorry that you are again faced with such difficult decisions. There is no easy answer but you are doing right by him in all you are doing!

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