Brave Ben is cured !!!

Original tweet

This tweet says it all!  It was posted yesterday on Twitter by Dr. Thomas Oxley, neurologist and  neurointervention fellow working with Ben’s doctor, Dr. Alejandro Berenstein, at Mount Sinai Hospital in New York.  As Ben’s mom said, “What a journey for a really little boy and a really Big God!”

Grandson Ben’s journey began in 2014 when he was rushed first to Erlanger Children’s Hospital in Chattanooga, TN and then to Scottish Rite (Children’s Healthcare of Atlanta) in Atlanta, GA where he was diagnosed with dural AV fistula, a vascular malformation in his brain.  He was only three years old.  Although doctors at Scottish Rite diagnosed the condition, they honestly admitted they could not treat it.  At Emory University Hospital in Atlanta, doctors told the family that without treatment Ben would die and that they could do neurosurgery, but the odds were not good.  We were told that Ben had a 50% chance of suffering a stroke during surgery or that he could die on the table.

My readers who have been following Ben’s story know that Ben’s dad contacted Dr. Berenstein, the New York physician who pioneered the procedure that would save Ben’s life.  Dr. B. said Ben would not die, and the chance of his having a stroke was only 5%, not 50%.  Just after Ben’s fourth birthday, Dr. B. performed two endovascular surgeries, the first to place tiny platinum coils in the fistula, and the second to further close it off with medical grade “super glue.”

The annual check up a year later showed that the original fistula had reopened, and a new fistula had formed.  Dr. B. again performed surgery in what was described as a life-threatening situation.

Yesterday Ben (now six years old) underwent a cerebral angiogram as part of this year’s check up.  His mom reported that he was in good spirits before the procedure…

Before the angiogram
Ben and his dad before yesterday’s angiogram

 

The procedure lasted about two hours, and our little trooper was required to lie still for six hours afterwards…

In recovery

 

While Ben was in recovery, his parents received the good news. The original fistula is completely gone.  The blood flow has been re-routed.  The new fistula that was developing last year is gone as a result of decreased pressure in the brain…

Collage

 

BEN HAS BEEN GIVEN A CLEAN BILL OF HEALTH !!!  There is no need for anymore annual trips to New York unless additional problems arise. There is nothing more except for an MRI in five years!

Ben is healed
From left: Dr. Thomas Oxley, Ben’s mom (our daughter), Brave Ben, Dr. Alejandro Berenstein, and Ben’s dad.

 

Ben wants to go back to New York for a visit sometime in the future, and he already has expressed sadness that he will not be able to stay at the Ronald McDonald House, which has been his home away from home and has provided his family with so much love and support…

Ronald McDonald House

 

There is no way to express the gratitude we all feel, gratitude to Dr. Berenstein and his team for healing our little guy, gratitude to everyone who has kept Ben in their thoughts and prayers, and most of all gratitude to God for all He has done. One of Ben’s favorite Scripture verses sums up what God has done for this little guy:

 “For I know the plans I have for you, declares the Lord, plans for welfare and not for evil, to give you a future and a hope.”   (Jeremiah 29:11 )

 

Soon after arriving at the Ronald McDonald House this week Ben went into the music room, picked up a guitar, and began to sing one of his favorite songs, “In the Eye of the Storm.”  Here is the YouTube video of the original recording of that song.  May it’s message comfort others as much as it has comforted our Brave Ben…

 

#Ben Strong       Soli Dei Gloria !

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Ongoing Headaches and an Upcoming MRI

We recently had a visit from grandson Ben, his first visit since undergoing the two operations for the AV fistula in his brain.  He had a great time going birthday shopping for his mom, playing with our neighbor children, and celebrating a belated Father’s Day with his grandfather and great grandfather.  But he still is suffering from headaches. Some come on suddenly and are severe, and others seem to be duller but last longer. Sometimes he says he just doesn’t feel good.

He managed a smile even though he wasn't feeling good.
Ben managed a smile even though he wasn’t feeling good. (His little dog doesn’t like to see him doing poorly.)

Another appointment with doctors at Emory University Hospital again confirmed that the headaches are a normal response to the changes in Ben’s brain caused by the operations.  The pressure in his brain, which may have been abnormal since birth, is returning to a normal level.  Blood vessels in the brain now have a normal blood flow. The headaches have lessened in frequency over time, and the doctors say that eventually they will disappear altogether. As I’ve noted before, Ben’s eye, which had been protruding due to the abnormal pressure, is no longer protruding.  And the limp he had developed is now gone.

As a precaution, Ben will be returning in July to Children’s Healthcare of Atlanta (Scottish Rite Hospital) for an MRI.  We are trusting that the test will reveal nothing of concern and that the headaches will continue to lessen both in frequency and in intensity. School starts here in Georgia the second week of August, and Ben is set to begin pre-K, hopefully with no more headaches.

Some headache-free fun at Nana K's and G-Pa's
Some headache-free fun at Nana K’s and G-Pa’s

 

“Believing 4 Ben” Helping With Medical Expenses

There have been two organized events to raise funds to help with Ben’s medical expenses, and those posts can be seen here and here.  However, it was just brought to my attention by a fellow blogger that nowhere have I provided information about how people who could not attend those events might also donate to Ben’s medical fund.  I can’t believe I never posted that!

It is possible to donate online here.  (http://www.gofundme.com/94klps)

GoFundMe

As can be imagined, the medical expenses are astronomical.  During the first operation, Dr. Berenstein placed 18 tiny platinum coils in the fistula in Ben’s brain, and each coil cost $5,000.  That’s $90,000 right there!

While at the hospital in New York, Ben’s parents were told that although the hospital itself is covered by their health insurance, the surgeon is considered to be out-of-network.  The insurance company even sent them a list of approved surgeons.  Too late!  The surgery was already done by that time, and Dr. Berenstein, the world-renowned neurosurgeon who performed the operations on Ben, was not on the list.  Ironically, the surgeons who were on the list were the ones at Scottish Rite Hospital in Atlanta who first diagnosed the AV fistula but told the family they were not qualified to perform the surgery. You gotta love the health insurance industry in the U.S. !

Smacked in the Gut by Life, Part 2: Waiting

(This article was first published on April 10, 2014 in unexpectedincommonhours.wordpress.com)

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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Smacked in the Gut by Life

(This post was first published April 6, 2014 in unexpectedincommonhours.wordpress.com)

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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