A few days ago I wrote about our three-year-old grandson B. who was diagnosed with an arteriovenous fistula (AV fistula) in the brain. (See that post here.)

B. was first taken to the children’s hospital at Erlanger in Chattanooga, TN where they did a CT scan, an MRI, and an angiogram to find out what was causing his left eye to protrude.  He was then transferred by ambulance to the Scottish Rite Children’s Hospital in Atlanta, GA where pediatric neurosurgeons made 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 extremely rare in children.

B. returned to the hospital on Monday, this time to a third children’s hospital, Egleston Hospital, which is associated with Emory University in Atlanta.  His mom took this photo at Egleston. I think it’s wonderful that even in hospital he could wear his special referee shirt and have his special pillow and blanket and keep by his side his stuffed toys, a ball, and the ipad on which he listens to his favorite singing group, Daves Highway.

Ben at Egleston

On Tuesday, additional testing was done at Emory Hospital.  (That now makes 4 hospitals within less than a week’s time.)  Vascular neurosurgeons now know exactly where the fistula is located and the procedure they will use to fix it.  However, there are risks including the risk of a stroke.  But doing nothing is not an option.  Doing nothing could be fatal.  There is a window of time available, and during that window, our daughter and her husband are seeking the opinion of the world’s foremost vascular neurosurgeon, who practices medicine in New York.

Sometime within the next two to four weeks, the procedure will be done to fix the AV fistula.  As I asked before, if you read this post and are a praying person, please add B. to your prayers.  We will be eternally grateful.  We are believing that the procedure will be successful and that B. will have a normal, healthy life.  I will keep you posted…

B. playing the guitar

 

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23 thoughts on “Smacked In the Gut By Life, Part 2: Waiting

  1. Still keeping you all in our prayers and hearts.. Healing thoughts are coming Ben’s way.. Give all hugs from mother and me. Thank you for the updates. Joye and Dee

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  2. What did you decide about your trip? You probably are not going now are you? I will go to El Sombrero tomorrow night for a little while… see who is in attendance–Karen said she may come and Kayla may also go–and maybe Susan??? but I don’t think anyone else is coming.

    You probably just need to rest and try to maintain your calm…

    Martine is leaving going to FL to be with her family in the midst of her tragedy.  They are trying to make sense of the loss of the brother. I haven’t heard anything from Rosanne Short about the condition of her husband today..It was an emotional weekend with all that was going on …  Thinking of your entire family and wish we could do something.

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    1. Joye, our trip was to have been this week. We had use of the timeshare from April 6-13, so the week is almost over now. We are spending today at the funeral of friend, and I seriously doubt I will be at El Sombrero tonight. Please tell everyone hello for me. I didn’t know about Martine’s brother or Rosanne’s husband. So much sorrow… Please give your mother my love. Thank you for all of your thoughts and prayers.

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  3. Thank you so much for the update Deb. I have been thinking of him and wondering how the prognosis was going. Francis and I will continue to keep B in our thoughts. It is lovely to see him smiling, in both photos. Our heart goes out to you.

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  4. I just read this and wanted to let you know I will keep that darling little guy in my prayers. God is good and know that He will watch over him. Blessings and prayers to B and your family.

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  5. Hi, Deb. My God, what a beautiful boy! I’ll pass along an update to the folks. Many have asked me how Ben is doing. Peace and patience, John

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    1. Thank you, John. The expert doctor in New York is out of the country until the 21st but already has looked at test results that have been emailed to him. He also has been in contact with the neurosurgical team at Emory Hospital in Atlanta and has emailed my son-in-law. But still we wait… Thanks to all of you for your continued prayers, Deb

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