Brave Ben needs your thoughts and prayers

A year ago grandson Ben was declared to be cured of a dural arteriovenous fistula in his brain

…but some problems have recently arisen, and his dad had to contact Dr. Berenstein in New York, the doctor who performed the procedures that saved Ben’s life.  Dr. B. wants Ben to have an MRI scan (Magnetic resonance imaging) and an MRA scan (Magnetic resonance angiogram) as soon as possible.  Those tests are scheduled for Friday.

It goes without saying that we are frightened, especially since Ben was doing so well and had been considered to be completely cured.  Our family is asking for prayers for Ben and for healing thoughts to be sent his way.  If the results of the scans are serious, he will have to make an immediate trip from his home in Georgia (or maybe even from Florida where he will be vacationing next week) to New York City.

My long-time blog followers know Ben’s story.  For my new followers and casual readers, I will give some background: 

Grandson Ben’s journey began in 2014 when, at the age of 3, 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.   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.

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 4th 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.

Last year Ben, then 6 years old, underwent a cerebral angiogram as part of the yearly check up.  While he was in recovery, his parents received the good news. The original fistula was completely gone.  The blood flow had been re-routed.  The new fistula that was developing the previous year also was gone as a result of decreased pressure in the brain.

But now we don’t know what to expect.

Please remember Ben on Friday and send your thoughts and prayers his way.

He has had a good year since being pronounced cured and recently completed first grade in school and celebrated his 7th birthday.  He is a bright little guy who enjoys school, plays sports, loves music, and has a strong personal religious faith.

A few photos taken by Ben’s mom as he finished up the school year…

With his silly glasses and the little girl who has been his “girlfriend” since pre-K

 

Last day of first grade

 

 

And a few birthday photos…

The birthday party featured a water slide and other outdoor water fun

 

The party had a Blue Angels theme. The Blue Angels are the flight demonstration squadron of the U.S. Navy.

 

Ben’s most treasured gift was a flight suit like those worn by the Blue Angels aviators. Later, he was very excited to receive a surprise package from a former Blue Angel !

 

This precious child means the world to so many people. We appreciate your healing thoughts and prayers, and we pray that the symptoms Ben has been experiencing will prove to be transient and not indicative of a recurring problem.

(Linking to the DP Challenge today.  We need all the views and all the prayers we can get.)

#BenStrong   #Soli Deo Gloria

 

 

Ben Is A-Ok Until May !

Four-year-old Ben recently had the third follow-up MRI since his two brain surgeries last May.  The MRI was at Egleston Children’s Hospital in Atlanta, and  the resulting CD of over 2,200 images was sent to Dr. Berenstein, Ben’s doctor in New York, for review.

The verdict: Everything is as it should be!  Dr. Berenstein sees no reason for Ben to have any additional MRIs until next May, 2015!  At that time, Ben and his parents will make another trip to New York City  for his first annual follow-up visit, when he will undergo an angiogram and possibly other tests.  No worries about the low blood flow through the repaired fistula in Ben’s brain.  No more headaches now, both literally and figuratively, as the headaches which caused Ben excruciating pain have now totally disappeared.

Our little man and his parents came to visit a week ago.  No one would know that anything ever had been wrong with him.

We made our annual trek to the pumpkin farm:

Ben among the pumpkins

Ben in the wheelbarrow

 

When we got home, Ben and his dad carved one of the pumpkins into a jack-o-lantern…

Pumpkin carving

Jack-o-lantern

 

But on the way home, before there could be any pumpkin carving, we had to make our obligatory stop at the old locomotive…

Old locomotive

Ben and his grandfather, who he calls G-Pa

On the old tracks

 

Ben also modeled his Halloween costume for us, honoring the heroes of the New York City Fire Department…

NYFD #1

 

NYFD #2

NYFD #3

Ben and his Papa, his great grandfather

 

And he spent much time at the microphone (which his indulgent grandmother purchased for him), playing the drum and the guitar and singing for us…

Playing the drum

Playing his guitar

Singing

Yes, I am proud of our miracle boy, and when he says to me, “Nana K., I love you so much, ” my heart just melts.

 

 

 

Home From The Hospital, But What A Fiasco!

Ben is back home from his most recent stay at Egleston Children’s Hospital, and what a splash he and his dad made as the little family headed home!  Dressed as superheroes, they wowed everyone who saw them!  They even remained dressed this way while stopping at a FedEx office to send Ben’s MRI results to New York.  But the hospital experience was not fun and games for Ben’s parents.

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Disagreement between doctors as to the proper course of treatment for the blood clots in Ben’s brain led to a very unfortunate incident that left Ben’s mom (my daughter) in tears and the entire extended family upset.  The surgeon in New York (the world-renowned expert in dealing with Dural AV Fistulas in children) who operated on Ben in May said that the clotting was normal, and the clots will dissolve.  Treating the clots, he said, could cause dangerous bleeding in the brain.  The team of doctors at Emory, the doctors who admitted Ben to Egleston Hospital, wanted to treat the clots.  When Ben’s parents chose to follow the advice of the surgeon in New York, the situation wasn’t pretty.

Here is a slightly edited version of my daughter’s account of events.  Yes, it’s longer than my usual posts here but well worth the read:

“On Tuesday, we traveled to Egleston to have a follow up MRI done, due to concerns about the continued headaches Ben has been having. The pediatric radiologist found extensive clotting in the venous system. He notified the Emory team heading up Ben’s care from Georgia, and they decided to admit us to the Pediatric Intensive Care Unit. We initially were told we would be there several days, and a blood thinner treatment would begin immediately.

While we were waiting, J. (Ben’s dad) began contacting and updating Dr. Berenstein’s (the surgeon’s) office in NY. They were responding back immediately, and wanted to be kept in the loop. While we were waiting in the Emergency Room, one of the Emory fellows made a comment that I didn’t like.  Discussing the entire case from the beginning to current state, he said “…before Dr. Cawley (the neurosurgeon at Emory) got the curbside.”  I immediately felt that there was some resentment about us choosing to go to NY (for the surgery) over using them (the doctors at Emory).  I let it slide though, but filed it away.

After we were settled in our room, Dr. B (in New York) called J. personally. Dr. B. specifically asked for the name and phone number of the on-call hematologist because he wanted to speak with them. He also explained to J. that this clotting was a direct result of the surgeries and was as he expected. He did not feel that it was a dire situation, and he wanted the Georgia team to hold off on administering blood thinners at that time until he could view the images from the MRI himself. Even though the Emory team was supposed to be sending him the files, Dr. B. asked that we overnight a copy to him. 

(Later) Dr. B sent J. a text message explaining that a mutual decision had been reached between himself and the hematologist to wait. So you can understand my surprise when the nurse came in around 11PM to administer the first injection. I explained the situation and showed her the text J. had sent me. No injections were given, and J. talked with the nurse about his conversation with Dr. B.

Shock #2 came when we were rudely woken at 6AM by an egotistical, highly unprofessional Emory neuro resident who proceeded to talk to us like we were dogs and berate us. J. and I both were so out of it, and half asleep that we were literally in shock at this outburst. He accused us of refusing treatment, wasting their ICU resources for the night with nothing having taken place, postponing treatment by a day when our son was at risk of stroke, told us that this is the kind of thing that patients are fired from practices over, and on and on.  J. spoke up and and told him we had done no such thing, and told him about the phone call between doctors.

The resident then began saying how Dr. B. probably strong armed the on-call, lower ranking, hematologist into going along with what he said, and how these high powered surgeons can be jerks (which we know is NOT the case with Dr. B.). He finished his rant and then walked out. (We were both in such a sleep deprived, shocked state that we weren’t of the right mind to put that idiot in his place on the spot.) I broke down immediately, and just sobbed.

We had the ICU lead doctor and 2 nurses come in and apologize for his behavior, and then J.  let it be known that that doctor was not to walk across our threshold again! (He will be dealt with through the proper channels.)

The plan for Wed. was for both the neuro team and the hematology team to speak with Dr. B, as only he knew what he had done in the surgeries and knew what to expect. Around lunchtime we received word that we would be released that afternoon, as Dr. B and Dr. Cawley (the lead neurological surgeon at Emory, who had been out of town) had spoken. It was agreed that blood thinners would not be started at this time (which one of the side effects of is bleeding). We spoke with the hematology team prior to leaving, but interestingly not the neuro team. We never saw nor heard from them again, and I greatly suspect a rather elevated level of professional jealousy from that team.

The hematology team will be facilitating follow up, which includes another MRI in 2 weeks and an appointment in their office the next business day. If the clot is the same size, or better, we will continue to wait, and schedule a 3rd MRI. If the clot is larger, then the hematology team will work with Dr. B in developing a new treatment plan.

The last couple of days were rough to say the least. It is very scary as parents to be going through all this, and now to know that our son has a large blood clot in his brain, and that there are dangers to treating it and dangers to not treating it. We are simply putting all of our faith and trust in God, that He will continue to hold Ben in the palm of His hands, and deliver him safely on the other side of all of this, that the clot will dissolve, the headaches will go away (which I am happy to say have lessened greatly in frequency over the past few weeks), and that Ben can lead a normal, healthy life. Please don’t stop praying for our brave little soldier. He remains as happy and cheerful as ever, and is not held back from normal activity, which is such a blessing.”

Please continue to keep Ben and his parents in your thoughts and prayers. Here’s a photo that I took of our still-happy little cutie patootie when he was at Egleston.

Ben at Egleston

 

 

Unexpected MRI Results: Multiple Blood Clots

Today Grandson Ben had his scheduled MRI, which did not yield the results we were expecting, and he has been admitted to the Pediatric Intensive Care Unit at Egleston Children’s Hospital in Atlanta.   The MRI showed no problems in the area of the brain where the two operations were performed in May. It also confirmed that the blood vessels that had been enlarged prior to the operations were now normal.  However, it did reveal multiple blood clots in the brain.

Doctors in Atlanta sent the images from the MRI to Dr. Berenstein, Ben’s neurosurgeon in New York.  Dr. Berenstein and Dr. Cawley, neurosurgeon at Emory University Hospital (which literally is across the street from Egleston), will be conferring as to the best course of treatment.

Our daughter and son-in-law had expected to be in Atlanta only one day for the MRI and now are looking at possibly several days there. They don’t know if Ben will remain in intensive care or will be moved to a regular hospital room.  And they don’t know when he will be released to go home.

Please keep our little man in your thoughts and prayers.  Updates will follow….

In the meantime, here is our little guy this morning before the MRI…

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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:

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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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