5.04.2012

I Hate This Shunt

So things haven't been going so great around our house the last few days.  To put it in perspective and to keep the BIG picture up front...Lucy had great scans!  However, the Lumbar Puncture that helped us verify no cancer cells also caused her shunt to malfunction.  After we celebrated Friday, things began to go down hill.  By Saturday afternoon, we were able to keep Lucy awake and she had a terrible headache (along with a lot of vomiting).  We knew that a trip to the ER was immediately in our plans.  I owe a debt of gratitude to Amanda, Sarah, Hogan and my parents for coming to our rescue with Ella and Jack.  We headed to St. Jude first, thinking that what she had was a spinal headache.  This was our poor girl on the way down.


This was Lucy at St. Jude.  We had to keep the lights off and she stayed buried under the covers the whole time we were there.  My heart was just broken.


Lucy and I got to take our 3rd ambulance ride of the year over to LeBonheur, after the radiologist confirmed that her ventricles were in fact enlarged.  We knew immediately that we were dealing with a shunt issue.  This has been one of my biggest fears since the shunt was placed.  I wish with all my heart my baby didn't have it.  I often wonder why she was dealt the hand of meningitis along with brain cancer.  I mean, wasn't the cancer enough?  One of the big questions I'll have when I reach the pearly gates for sure.  

It was a very late night and we got very little sleep, since we were all up at 7:00am for surgery.  Luckily Dr. Boop was able to repair the shunt without having to do a total revision.  And by that afternoon she was a totally different child.  She even walked to the play room to play the Wii.  



By Monday morning we were on our way home.  


 But the joy didn't last very long.  AT ALL!  10 minutes away from LeBonheur, Lucy started vomiting again.  This continued through the day/night and when we called Dr. Boop he wanted us to come in the next morning ASAP for a CT scan and exam.  My poor baby was still so very sick.


Luckily the CT scan was clean so we knew we weren't dealing with a shunt issue again.  Unfortunately, what she was suffering from was a spinal headache remaining from the Lumbar Puncture.  Only time and a lot of rest will heal that.  And of course, a nice box of goodies sent from our friends in Pennsylvania at St. Paul United Church of Christ in Allentown, PA.  Thank you guys so much!


This road to recovery has been hard.  I won't lie.  I will also be honest and say that I'm having a hard time right now.  Questioning a lot.  I'm pretty mad, too.  Not mad at God, just mad at the whole situation.  All of it.  It makes no sense.

Today (Wednesday) was a little better for Lucy.  We are praying that each day she will feel a little better and will soon be back to her "old" self.  "old" being 1 week ago.

Thanks for the prayers!

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25 comments:

  1. spent today with my neurosurgeon for a shunt issue... most kids with shunts get them AS kids, i was 22 and it's a rough thing to deal with. i know someone who had one placed as a baby & never looked back, not a single further surgery, and in 2 years i had 3 (plus another unrelated brain surgery to place a monitor in my brain to track my pressures). some kids have problems every month. doesn't make sense how some get dealt a bad hand on top of a bad hand while others sail on through, huh?

    i know this particular pain (shunt surgery, revision surgery, and the way you feel when the shunt malfunctions before it's fixed) so i will be saying some extra special prayers for Lucy... and for you, since i've seen what watching me go through it all does to my Mom. ;-)

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  2. Prayers for Lucy!

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  3. I am sorry and praying for Lucy and your family daily...

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  4. We are praying for Lucy to feel better. Nothing, and I mean nothing, is worse than watching your baby suffer. I have had bruised knees praying for Owen's comfort on more than a few occasions.

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  5. Kate... I'm so mad FOR you! It's just ridiculous what you all have to endure. I just know that God has big things in store for all of you-especially Lucy. If God is teaching us through your misery I just want to shout ENOUGH! We get it!! We are not worthy of her suffering to learn how precious life is. We get it! I'm just so sorry.

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  6. So sorry Lucy - and you - are having such a tough time. Those pictures of her on this post, feeling so poorly, just break my heart. As a mum who had also has to watch her child endure numerous procedures, I just wanted you to know that you are in our thoughts and prayers. I've been following your blog for quite a while now, but don't think I've ever commented before. Hang in there. xxx

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  7. Michelle from AustraliaMay 5, 2012 at 6:47 AM

    She has an absolutely radiant smile. I will add in my prayers for comfort, healing and a return to 'old' Lucy. God Bless you all.

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  8. I think sometimes you have written all the things I never wrote. You let it all out, and I just delivered the "facts" not the feelings of the whole thing. Your feelings are not singular and your questions are not unmerited! I have felt ALL of what you are feeling. We always joked with the nurses and doctors about Ivee. We would bring her in and say it maybe be this or that but that is rare. I would respond, "Have you MET my daughter? If it's rare, it's going to happen to her!" And it always did! There is another side to the mountain your climbing, and as I discovered, the mountain is a steep one with many hills and valleys on it! You'll make the climb over each one with God and Eric and family/friends by yourself. There will be times you feel lonely/alone, but your not. Keep the faith my friend! Call or text me if you need to vent! I got your back! Love Hope

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  9. MarybethkindredMay 5, 2012 at 8:28 AM

    Poor Sweet Lucy and her family!! It isn't fair!!! I will continuously pray for her as well as your family. It's time for Lucy to have the wonderful days she so much deserves!!!!

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  10. Prayers headed your way. And please, PLEASE remember it's ok to be mad, ok to hate the shunt, all of it. Please take care and know the prayers never stop.

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  11. praying praying praying!!!! go lucy go!!!!

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  12. Praying for Lucy and for you! Keep relying on God's strength, and remember that He is with you each moment.

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  13. This morning I was up early, sitting outside alone while the sun was rising, I prayed long and hard for Lucy. I heart goes out to you and I'm sure this is so hard for every one involved.

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  14. Kate,
    I can't tell you how sad I am for all of you and especially Lucy.
    I know, without a doubt, that God has something special for Lucy. He has taught us all so much already.
    I will ramp up the prayers for your family.
    Please don't loose heart. Everything you are feeling is sooo normal just don't stay mad. That is what my pastor always told me.
    Not physically knowing your family seems like a minor detail to the love I feel for all of you. With Lucy suffering, you all suffer.
    On a different note, her hair is coming is so fast! Adorable!!

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  15. Oh how these pictures bring back memories. My daughter had her shunt put in when she was 5. By the next day she was doing somersaults, because she felt so much better. Praise God it hasn't malfunctioned!! She will be 19 in a couple of months. She also had a non-cancerous tumor at the time, that they were able to remove. Her scar runs from the middle of her forehead down to her ear. I know our situations are not the same, but you are in our thoughts and prayers. It breaks my heart that you have to go through this.

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  16. Oh poor baby! Cancer stinks! Praying for you Lucy. Be strong and rest up, knowing Jesus is cradling you.

    Praying and praying,
    <><

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  17. Praying for your sweet Lucy. I check here often to see how she is doing. I know from reading here that she is such trooper. I will continue to pray for the Lords sweet comfort to surround you during this time.

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  18. i've been following your blog since lucy's diagnosis, but i think i've only commented once. i pray for you and your family often. i personally know the PAIN of a spinal headache, so i will be praying even harder for sweet lucy. hang in there, mama! you are doing an awesome job!! (looking forward to sporting my go lucy go t-shirt...i'm a fabulous spirit runner!) :)

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  19. Laura TomlinsonMay 5, 2012 at 8:37 PM

    It never ceases to amaze me how Lucy smiles in nearly every single picture you post. She's beautiful and you can tell that she KNOWS she's loved. God bless you all.

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  20. I am so sorry for you and Lucy. Through your words, I hear your pain each time she has a set back. I pray that all will settle down soon and you all can have some normalcy. God be with you along with the prayer of MANY of us out here.

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  21. Hi, I follow your blog and pray for Lucy and your family often. My family has been through something very similar to what you all are facing and my heart goes out to you. I read this article below and thought it might encourage you somehow......God is good no matter what, how God can use the difficulties in life to save many lives.

    http://www.chieftain.com/news/region/family-church-look-to-god/article_022e303e-9282-11e1-b8e7-0019bb2963f4.html#.T6bDBjZJ0ZI.mailto

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  22. Lucy is in my prayers daily. I check on her every day. Her sweet smile blesses my heart. Sometimes, you can tell she doesn't feel like smiling, but she does. She is an inspiration.

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  23. Lisa Brandon GordonMay 8, 2012 at 9:54 AM

    God bless!

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  24. Always praying for your baby girl!

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  25. Leila and family of LondonMarch 22, 2013 at 10:00 PM

    For you Lucy, and all of your family, I pray, that your united strength will carry on getting stronger each day, and be a shinning light for all of us. God bless you all, and may your shinning light reach out to us all and be an example of what we all can do for each other through pray, strength, and family xxx

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