CVR

I'm getting way ahead of myself in researching, but I find it I incredibly hard to just sit here uninformed, waiting. Wesley's appointment with the cranio facial clinic (a neurosurgeon and plastic surgeon) is on Wednesday, which feels so far away. So in the meantime, I joined a facebook support group for craniosynostosis and have been googling like crazy. I say I'm getting ahead of myself because I really don't know any specifics about Wesley's case, just that the neurologist saw some premature fusing (which she was increadibly vague about), we should be seen in the cranio facial clinic, and he may need surgery. In my infinite wisdom and advanced medical knowledge (yeah right) I've contorted all of this to meaning he will need surgery and a helmet and we better do it ASAP before anything really bad happens. 

I just google-imaged "cranial vault remodeling surgery" (which is what Wes will likely have to have). I really wanted to know what exactly the surgery entails because remodeling a skull seems pretty invasive and scary. Well I'm starting to think someone should take google away from me because before surgery seemed scary but doable, now it seems outright terrifying. They essentially remove the entire skull, (leaving the brain exposed) cut the bones up, reshape them, reinsert them and screw them back together. Then after the surgery they have some serious facial swelling while they heal. What a crazy idea that we can do that without serious, long term side effects.

 Surgery seems scary enough but it also entails a 3-5 day hospital stay for recovery. Just thinking about being back in the hospital, having Wes intubated again, seeing him hooked back up to monitors, seeing him swollen again, and living in the hospital again gives me serious anxiety and brings back some traumatic memories. I wish Colby were here... I'm tired of being the "strong one."





Wesley's eating adventures of the day.

Comments

  1. QuilterbunnyJuly 17, 2012 at 8:10 AM

    Sometimes I wonder if we weren't better off before computers and all the easy researching! Try not to let it get you down. We all wish Colby was there to support you through this time! You ate constantly in my prayers and we know that the Lord will give you the strength to keep on going.
    Hugs
    Love You
    Grandma

    ReplyDelete
  2. KristaJuly 17, 2012 at 10:40 AM

    I love the avocado picture! He is too cute!

    Keep going, Megan...one step at a time...can you even imagine what people in your shoes feel like if they don't know that God is sovereign and good? I'm so glad that you have all the support you do while Colby is away.

    ReplyDelete

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