A salute for G-Pa and a visit with cousins

It’s been three months since I last posted about grandson Ben, and since then our family has faced a serious medical situation.

Ben and his mom were visiting for the weekend when my husband, Ben’s G-Pa, had a major stroke last month.  The situation could have been quite frightening for a six-year-old boy, but Ben showed no sign of distress.

Because he idolizes emergency workers and because he, himself, has been transported by ambulance, Ben welcomed the EMTs as they came to treat his G-Pa.  As G-Pa was being taken out of the house on a gurney, Ben stood ramrod straight and saluted his grandfather the way soldiers, firefighters and police officers salute a fallen comrade.  I will never forget that sight as long as I live.

His own time spent in hospitals has made Ben very aware of proper hospital etiquette.  Though he spent many hours at the hospital while G-Pa was there, both in the emergency room and in G-Pa’s hospital room, he exhibited model behavior and acted in quite an adult manner.   I was very proud of him.

Over the course of G-Pa’s hospitalization and immediately after he came home,  both daughters and all three grandchildren visited, coming and going and coming back again.  Ben was able to visit with the two cousins he rarely gets to see.

He loved being with cousin Kylie who flew in twice from Florida…

 

And cousin Jessie who flew in from Boston where she attends college…

 

Here’s the entire group (minus me) with G-Pa after he returned home…

Ben’s mom (in pink), Ben, cousin Kylie, cousin Jessie, Aunt Chris, and G-Pa

As always, please keep Ben and our entire family in your thoughts and prayers.

#BenStrong   #Soli Deo Gloria

Advertisements

Registered for Kindergarten!

Now that Christmas is over, the school year here has reached its half-way mark.  It’s time for Ben to be registered for kindergarten for the 2015-2016 school year which will begin next August.

Santa's helper

Santa’s helper at Christmas

 

He currently attends pre-K at the elementary school near his home, and he loves it!  He will remain at the same school for kindergarten and already has asked his parents if he can add sports (T-ball) to his future activities. Who would have thought that this little guy would have two brain surgeries and a few months later be able to play T-ball!

 

Our Christmas visit with Ben and his parents passed all too quickly.  The two train lovers enjoyed time together watching videos of freight trains.

Looking at trains

Looking at trains with G-Pa

 

Our budding musician now has a keyboard and enjoyed playing it for us.

Playing the keyboard

Playing the new keyboard

 

And his great grandfather (my father) gave him a Christmas gift of a bicycle which he took home and enjoys riding around his neighborhood.  I’m so glad Ben lives in the type of neighborhood where children can ride their bicycles and play outside like children were able to do when I was young.

New bicycle

A bicycle from Poppy

 

In May, Ben will be back in New York City for his follow-up medical tests with Dr. Berenstein.  We hope to visit our little guy a couple of times before he and his parents make that trip.

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.

10437339_10152554142822384_4651469699947562902_n

10538645_10203686219292247_9098786864071212904_n

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.

10482564_10203670510619540_731648114322400920_n

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…

10489779_10203659684628897_5171740677432565361_n

 

A Clean Bill of Health and an Excellent Prognosis

After 24 hours with no blood clot formation, Ben today was given a clean bill of health by Dr. Berenstein.  We can hardly believe that after so many hospital visits, so much concern and fear for this precious child, and two brain surgeries within one week, he now will go on to live a normal life.  We cannot thank everyone enough for their thoughts and prayers and kind, encouraging words.  We cannot thank Dr. Berenstein enough for what he has done to save Ben’s life and make him whole again.  And we can never thank God enough for touching Ben with His healing hand.

Our sleepy boy is going to be okay!

Our sleepy boy is going to be okay!

Our daughter, Ben’s mom, gave us this report today:

Nothing is too great for our God!!
I am so happy to tell you that earlier today Ben was taken off of the IV drip and the blood thinner he had been on since his surgery yesterday. Dr. B. has given Ben a clean bill of heath! He told us that after a couple weeks of rest and downtime, Ben can lead a normal life, with no restrictions! That means if he wants to play ball as he gets older, he can with no worries from this disease that is now behind us!
I’m not going to lie, yesterday (the day of surgery #2) was tough. We had a couple of scares that had us being rushed down for a CT scan to make sure there was not a brain bleed. There was not, but the symptoms Ben was experiencing were scary enough. Ben is a trooper though, and got back to normal by yesterday evening. He has been his usual self today. You would never know that he just had 2 major brain surgeries in a span of 4 days, with the latter having been just yesterday!
We will need to come back for a check up and scan in about a year, and that’s it! Thanks to the Great Physician our baby is healed! We just want to thank everyone so very much for all of your continued prayers and support. I have no doubt that God heard each and every one!!

Ben is enjoying playing in the hospital playroom, watching movies and calling relatives on the phone.  He told me he wants to come to my house for a visit and is asking me to make his favorite breakfast foods: cinnamon muffins (that he calls cinnamon snowballs) and pumpkin bread.  Ben will remain in the hospital until Sunday and then will be coming back home sometime next week.

Successful Super Glue Surgery But Not Yet Out of the Water

An angiogram this morning showed that there still was a relatively high blood flow in the area of Ben’s brain where Dr. Berenstein placed the platinum coils on Monday.  Today’s procedure was similar in that it also involved placing a catheter in the femoral artery in the groin area and sending it up to the brain, but this time the surgeon used medical-grade super glue to completely close off the area. The surgery was successful, but the next 24 to 38 hours are critical.  It is imperative that no blood clots form in the affected area.

10351973_756395024412591_810708656933203301_n

After “super glue” surgery

Please continue to keep our little man in your thoughts and prayers.  He’s a very brave little guy.

 

Enhanced by Zemanta