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.
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.