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

 

 

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 !

Another Brain Scan + the First Day of Kindergarten

Yesterday while his classmates were meeting their kindergarten teacher for the first time and getting ready to begin another school year, Ben and his parents were at the Children’s Healthcare of Atlanta facility in Kennesaw, GA for more brain scans.

I’ve noted here before that Ben will be starting physical therapy to help with the lost range of motion in one foot.  In July, while he was on his summer family holiday at the beach, that lost range of motion became severe, and he woke up one morning having trouble walking.  His parents were understandably very upset and contacted Dr. Berenstein, Ben’s doctor in New York.  Dr. B. felt that an MRI on the brain was in order.

In spite of the temporary difficulty, Ben had a wonderful time at the beach.

After returning home, Ben met with a doctor and a physical therapist at the children’s hospital in Chattanooga, TN.  He was given stretches to do (which greatly improved his range of motion), but the doctor there also felt that an MRI should be done.

So yesterday, Ben was put under anesthesia for what seemed like the one hundredth time, and scans were done both with and without contrast dye.  His mom told me that about 1800 images were taken, and a CD containing the images will be sent to Dr. B. in New York.  Needless to say, we are hoping for good results.  If the scans show that there are no new fistulas in Ben’s brain (other than the one that will be repaired in December) and no problems with the repairs already performed on the original fistula, then we can rest easier about the foot problem.

After the MRI, Ben asked his parents to take him to his favorite place to eat, Chuck E. Cheese’s, where he could eat pizza and have some fun playing as well…

 

Ben lived the first three years of his life with a dural AV fistula that was undetected, and it did cause pressure in his brain and probably caused neurological damage.  Now as he grows, his muscles don’t grow as fast as his bones, and we are seeing that lost range of motion.  We pray that the stretches and physical therapy will take care of the problem.  He was able to run and play T-Ball this past Spring, and he is signed up to play soccer which starts soon.  His dad will be the coach of his soccer team and will keep a close eye on him.

And today Ben began kindergarten!  Today is Friday and yes, schools around here begin at the end of the week to give the youngsters a chance to get acclimated to the teachers, classmates, and schedule before beginning in earnest.  Our little guy is attending the same school where he attended state-funded pre-K classes last school year, so he already is familiar with things there.  His mom said he loved his first day of kindergarten!

1st day of kindergarten

1st day of kindergarten 3

 

 

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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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

 

Suffering From Headaches

Grandson Ben still is suffering from headaches that come upon him suddenly and vary in intensity from mild to quite severe. It has been three weeks since he underwent the two surgeries to repair the AV fistula in his brain. His aunt, who spent a good deal of time with him this past weekend, described him as “pitiful” when the headaches come upon him.  Later this week Ben will be seeing his team of doctors at Emory University Hospital in Atlanta.

My son-in-law (Ben’s dad) posted the following message today:

“Please continue to pray for our “little soldier”. Since the surgeries, Ben has been having headaches. He has them several times/day and even at night (they wake him up). Often, they hurt to the point of crying and screaming. When asked “where does it hurt”, he points to the same exact place, on his head, every time. We have spoken with Dr. Berenstein and his team (in New York) several times and they have assured us that, b/c there are no other symptoms to accompany the headaches (i.e. slurred speech, swollen eye, poor balance, seizures, etc), there is nothing to worry about. Just to be sure, Dr. B wants Ben’s team of doctors, at Emory, to check him out and be certain there is nothing going on. We have to be at Emory this Thursday at 10:15 AM.
Please continue to lift Ben and our family up in prayer. Our little man has already been through so much. He’s just ready for it to be over with.”

Smacked in the Gut By Life, Part 3: No More Waiting !

Grandson Ben turns four years old on May 12, and three days later he and his parents will fly from Georgia to New York City for his neurosurgery.   Is it terrible for this grandmother to be excited about this?  I so want this precious child to be completely healed.  We have been so distraught and worried, not knowing when or where the surgery would take place, and knowing has brought a sense of relief.

Dr. Alejandro Berenstein, the world’s foremost pediatric endovascular neurosurgeon has reviewed Ben’s case and the results of the tests done at Emory University Hospital in Atlanta.  He phoned my son-in-law two days ago and said that he personally would do the surgery to correct the AV fistula in Ben’s brain.  From what we understand, Dr. Berenstein actually developed the procedure that he will be using and that now is used worldwide to correct this type of problem.

Ben will meet with the doctor on Friday, May 16 and then will have the weekend to be with his mom and dad in New York City before the surgery takes place the following Monday.  By coincidence, Ben’s uncle J. from Florida will be in New York on business at that time and had already planned to take his daughter, one of Ben’s favorite cousins, with him on the trip.  What a blessing that Ben will have his uncle and cousin there for the weekend!

In the meantime, there are ongoing fundraisers to help defray medical costs, including a benefit auction that already has been held and an upcoming Benefit for Ben event with live music, raffles, and other activities.

Benefit for Ben FB page

Family, friends, neighbors, colleagues at work, and church congregations have rallied around Ben and his parents.  Automobile magnets have been ordered, asking for prayers.

Ben magnet

And Ben’s mom and dad are working hard to fulfill orders for “Ben bracelets” that people are wearing to remind them to keep him in their thoughts and prayers daily.

Ben bracelets

Many thanks to everyone who continues to ask about Ben.  Please continue to remember him as as he undergoes this neurosurgery.

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