Smacked In the Gut By Life

Sometimes life has a way of coming in from the blind side and smacking us in the gut.

Such was the case this week when our three-year-old grandson was diagnosed with an arteriovenous fistula (AV fistula) in the brain.  This precious child, whose photos I have used in this blog many times, will be scheduled for brain surgery this next week.

This is one of my favorite photos of him, taken not by me but by a wedding photographer when B. was the ring bearer recently in his dad’s cousin’s wedding:

Ben at cousin's wedding

Smart, with athletic ability, musically inclined, spiritually aware, and full of life and energy,  B. has an abnormal connection or passageway between an artery and a vein in his brain.  Just over a week ago, his mom (our daughter) noticed that B.’s left eye appeared to protrude slightly.  She set up an appointment with his pediatrician on Thursday, and the pediatrician sent him immediately to the children’s hospital at Erlanger in Chattanooga, TN.  There they did a CT scan, an MRI, and an angiogram and then transferred him by ambulance to the Scottish Rite Children’s Hospital in Atlanta, GA.  Before he was transferred, his mom took this photo:

IMG954864

It was at Scottish Rite that we learned the diagnosis.  The AV fistula probably has been present since birth and is causing pressure within the brain, including behind the eye which accounts for the protrusion of the eye.  It is very rare in children.  The pediatric neurosurgeon has called in another specialist who will be looking at all of the test results tomorrow (Monday).

B. finally was allowed to eat after going without food or liquid for 24 hours:

Hospital food

And he was allowed to play in the playroom and to go outside to a garden where he could throw coins into a fountain:

Playing the saxophone

At the fountain #1

At the fountain #2

Every Saturday, students from Kennesaw State University come to the hospital to do crafts with the children.  Before he was released to go home for a quiet weekend, B. made himself a bracelet, assisted here by his mom and by a Kennesaw State student who shares the same name as B. :

Bracelet making

When B. returns to the hospital this week, it will be to a third children’s hospital, Egleston Hospital, which is associated with Emory University in Atlanta.  He will be having brain surgery, although as of yet we do not know when, or what it will entail, or the possibility of success.  There may be several surgeries over a period of time in order that the pressure in his brain not be relieved all at once, which could itself cause problems.

All of us in the family are both frightened and hopeful and are asking everyone we know to pray for B.  Many thanks to John at A Napper’s Companion who already has put B. on the prayer chain at his church. Many friends and family members have added him to their churches’ prayer lists.  I taught for many years at a school with international students who now are Facebook friends, and B. will have their prayers from all around the world.  If you read this post and are a praying person, please add B. to your prayers.  We will be eternally grateful.  I will keep you posted…

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21 Comments Add yours

  1. My heart goes out to your whole family at a time of so many unknowns. Bruce and I will be keeping all of you in our thoughts.

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    1. Thank you so much. This little boy is the light of my life.

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  2. soonie2 says:

    Oh I’m so sorry to hear this. Please know that I will be keeping B., you, and your family in my prayers. Sending positive thoughts and hugs to you all.

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    1. I appreciate your prayers and thoughts. Thank you!

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  3. I will keep B. in my prayers. Take care and stay strong.

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    1. Thank you. It’s comforting to know that so many people are praying.

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  4. John Coleman says:

    Hi, Deb. The prayers of Abiding Hope Lutheran Church in Erie, Pennsylvania, are making heaven noisy. Please know we also pray for you and the whole family. Love for a baby has a sweet ache in the best of times. Right now, well, “smack in the gut” is a polite description. Feel the love coming your way from all quarters! John

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    1. Thank you so much. B. is back in the hospital as of this afternoon. There will be additional tests in the morning, and then the doctor will decide how to proceed. My husband and I will be there tomorrow.

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  5. Amy says:

    B is in my prayers every day until he recovers completely. Stay strong.

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    1. Thank you. He was admitted to the hospital again about an hour ago for more tests. We will join them there tomorrow.

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  6. Laura Bloomsbury says:

    Praying for a positive outcome for your charming grandson

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    1. Thank you so much! We appreciate your prayers.

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  7. Patti Petit says:

    Debbie, you may be sure Ben is in my prayers and has been added to another prayer list. Much love to all of you.

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    1. Thank you, Patti. And thank you so much for the cards you sent for Ben. They arrived today, and I will make sure he gets them all. We appreciate your prayers and support so much.

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  8. Amy Pinkrose says:

    Honey, I am praying for Bruce. OH, I don’t know how parents do “this” when “this” happens. I take care of and love, 14 special needs cats who all have medical dis-eases, some quite serious. When they go through a bad spell, I am a wreck. God be with you and your entire family. Call upon Him, and He will not let you down. BIG (((HUGS))) Amy

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  9. cindy knoke says:

    Hugs, prayers, hopes, empathy and healing energy flying his way. I am so sorry!

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    1. Thank you! We are very grateful for all the thoughts and prayers.

      Like

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