Waiting on Ben’s Results

The results of  grandson Ben’s brain scans, which were done here in Georgia on Friday, were “over-nighted” by Federal Express to New York where Dr. Berenstein will view them.   Over 57,000 images were taken during the MRI and the MRA. Now all we can do is wait, but we hope to hear results this week.

Before his brain scans Ben was in good spirits and played video games while waiting at the Children’s Healthcare of Atlanta facility…

 

Over the past 3 years Ben has had a number of brain scans, but this was the first time that he was not sedated. Here’s what his dad said…

Today was the 1st time Ben has ever attempted to have an MRI/MRA w/o anesthesia. The nurses & lab techs allowed me to pick him up & set him in the “tube”. After having multiple shields & guards placed over him, they told Ben that he “could not move for the duration of the scan”. Over the next hour, he was so uncomfortable that he started to cry but HE NEVER MOVED!!! After everything he’s already overcome, I shouldn’t be surprised by anything he does but this blew me away.

Ben’s dad is the youth minister at the church they attend and was scheduled to take the high school youth group to the Six Flags Over Georgia amusement park the day of Ben’s scans.  He had to ask other people from the church to take the youth to the park and planned to join them after the scans. However, because Ben didn’t have to recover from sedation he was able to go, too, and was very excited…

And the youth group members welcomed Ben with open arms…

Most teens could care less about little kids. NOT MY YOUTH GROUP!!! All 23 ppl who went to 6 Flags today stopped what they were doing & gave Ben a huge hug as soon as they saw him. After lunch, he didn’t want to hang with me. Several members of the youth group offered to stop what they were doing & quit riding the “Big Boy” rides and instead, take Ben to the “Kiddie Rides”. I never asked them to do it….they wanted to!!!

Ben and his parents have now joined extended family on his dad’s side for a beach vacation. However, if after viewing the images sent to him, Dr. Berenstein finds an “emergent situation,”  they may have to leave the beach and travel to New York.  The waiting is the part that is so scary.  As his dad says, “Your prayers have gotten us through the 1st stage of this test but there’s a much bigger hurdle in front of us now. Please DO NOT STOP PRAYING!!!”

Thanks to everyone who is keeping Ben and his family in your thoughts and prayers.

#BenStrong   #Soli Deo Gloria

 

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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

 

 

Three years ago today the journey began

Grandson Ben’s dad reminded us that it was three years ago today that 6-year-old Ben’s medical journey began.  This journey would see him diagnosed as a 3-year-old with dural arteriovenous fistula, a vascular malformation in the brain that was potentially fatal.  And it would take him to several hospitals and through 3 brain surgeries.  Today, he is a happy, healthy, thoughtful, kind young man who plays sports, enjoys school, and is about to celebrate his 7th birthday.

Here is what Ben’s dad posted today:

Capture

Note: TC Thompson is the children’s hospital in Chattanooga, TN.  Scottish-Rite hospital is part of Children’s Healthcare of Atlanta.

 

And here is Ben (with dark hair) with his dad and his friends Carter and Cameron:

 

On April 6, 2014,  I posted my first article about Ben’s medical condition.  That was on my original blog unexpectedincommonhours.wordpress.com.  The article later became the first post of this blog which is devoted entirely to Ben’s continuing journey.  Here’s the link to that original post: https://believingforben.wordpress.com/2014/04/20/smacked-in-the-gut-by-life/.

Many thanks to everyone who has supported Ben and his family during the past three years.  It has been an incredible journey to be sure and one that has had a amazing outcome.

#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

 

 

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.

 

 

 

Latest MRI Results: Some Good News and Some Not-So-Good News

Ben’s MRI was two days ago.  This was the third follow-up MRI since his two brain surgeries last May and was the 10th time our little man has been under anesthesia.  His mom said he did great even with the IV, which is his least favorite part of the ordeal, and the doctor said Ben was his best patient all day.

The good news: Ben’s headaches are almost nonexistent now, and the blood clots in his brain are getting smaller just like Dr. Berenstein said they would.

The not-so-good news: there is a “low flow” of blood through the repaired AV fistula in the brain, and there should not be any blood flow there. To make matters worse, the doctors in Atlanta knew of the low flow last July (LAST JULY !!) when Ben had the first two MRIs, but they said nothing to my daughter or her husband about it.

Over 2,200 images have been sent to Dr. Berenstein in New York for his review, and my son-in-law has personally contacted Dr. Berenstein’s office.  At this point, if any additional brain surgery has to be done to further repair the fistula, there will be another trip to New York.  Please keep this little family in your thoughts and prayers.

Meanwhile, on the way home from the Atlanta hospital, Ben and his parents stopped for lunch at Chuck E. Cheese.  If you’re not familiar with Chuck E. Cheese, it is a family entertainment center that bills itself as a place “Where a kid can be a kid”, offering food (mostly pizza), games, prizes, and lots of fun!

B. at Chuck E Cheese

Unfortunately, when they arrived home, they were placed under a tornado warning and had to take refuge for about 30 minutes in closets in their house. A tornado touched down and damaged houses some miles from their home but then appeared to have lifted and traveled overhead without causing any damage nearby.  Ben and his dad had already changed into superhero outfits by that time, and I’m sure Ben felt like a superhero after such an exciting day.

Superheroes on tornado day

Undoing Some Dental Work For Ben’s Upcoming MRI

Two days from now grandson Ben will have the third MRI since his two brain surgeries last May.  In July he had two MRIs, both of which showed that blood clots had developed in his brain.  His doctor in New York was confident that the clots will dissolve on their own, and this upcoming MRI will reveal whether they have in fact begun to dissolve or whether treatment may be necessary.

In August Ben had dental surgery in which his baby teeth were capped. The dentist also put in a spacer.  Unfortunately, the MRI cannot be done with that much metal in Ben’s mouth, so another trip to the dental surgeon was in order.  The spacer was removed yesterday.

In the meantime, Ben continues to love pre-K and enjoys his trips to the library, his music class, and playing in the school gymnasium and on the playground.  He also loves the activities at his church, like this recent pirate event…

Ben the pirate

 

Please keep Ben in your thoughts and prayers as he undergoes this MRI.  We are believing that the clots will be gone and that he will not have to be placed back in pediatric intensive care for treatment.  Our little guy has gone through so much, but he has a deep faith that sometimes amazes me.  This is one of his favorite songs, one that this precious 4-year-old often sings…

 

 

Another MRI And A Positive Report

A little over two weeks ago, grandson Ben had an MRI at Egleston Children’s Hospital in Atlanta that revealed that blood clots had developed in his brain. Upon the advice of his surgeon in New York, the clots were not treated at that time.  Dr. Berenstein said that the clots were a normal occurrence after this type of surgery to repair a Dural AV fistula and that they would dissipate on their own.

A second MRI was scheduled for last Friday at Scottish Rite Hospital which also is part of Children’s Healthcare of Atlanta. Ben must be sedated each time he goes in for testing, and his mom said the sedation team on Friday was the best so far. Because they used a stronger MRI machine this time, the medical personnel actually had to find out the manufacturer of the platinum coils in Ben’s brain before they could do the test.

Results of Friday’s MRI were available today, and we were happy to learn that although the clots have not diminished, they have not grown larger.  Ben will not have to go back in for a third MRI until sometime in October.  That will give doctors a longer period over which to compare test results.

In the meantime, Ben still suffers from headaches, but they are less frequent and less intense.  He swims almost every day and enjoys riding his bike and going to baseball games. And he is excited about beginning pre-K next week.

As always, please continue to keep Ben and his parents in your thoughts and prayers.

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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