One of the reasons I blog all of this is that it is therapeutic for me. (Also, my brain and thoughts are all over the place, and since I am not the most organized of people, having all my notes, thoughts, and feelings in one place makes it easier for me to be organized.) Maureen brought up such good points here that she made me really take a step back and look at the bigger picture today after the phone call below.
After what happened yesterday with Dr. G’s nurse coordinator, I sent an email to Dr. W., Hannah’s guardian angel (and top Gaucher’s specialist) from back east to touch base. I also asked if he knew Dr. E. (to see if she really was a world-reknown pediatrician in lysosomal storage diseases). Here was his response…”Dr. E. is a superb physician and wonderful person. She is an excellent geneticist whom I know personally. She did some of her training at XYZ and I am sure that she encountered some Gaucher patients there. I always think of her, however, more in terms of Fabry disease, a condition in which she is a world expert, and perhaps that’s why I didn’t mention her name previously. If it doesn’t raise too many political hackles, having her involved in Hannah’s care can only be beneficial!”
As I was driving home from picking up Little Girl A from preschool (along with Big Boy E and Hannah in the car), I got a phone call from an “unknown number.” It was Dr. E., the director of the genetics department at the hospital that I mentioned below, and Dr. G’s boss. She was very nice. She just wanted to introduce herself to me, share her credentials, and to let me know that she will be taking over coverage of Hannah’s infusions (apparently Dr. G. doesn’t have infusion priviledges, so it all has to go through her anyway). She also offered to take over complete coverage of Hannah’s care if we decide to. She asked me if I wanted to set up a consultation with her so she can review Hannah’s case.
I took into consideration what Dr. W. said, what happened yesterday on the phone with Dr. G’s nurse coordinator, and the fact that I am now realizing that Hannah is a very unique Gaucher’s case (which means she will get special attention because apparently doctors like a challenge), my husband and I decided we are going to go ahead and switch to Dr. E’s service. She only has clinic hours on Wednesdays, but she wants us to meet us at the Infusion Center on next Thursday to do a consultation and to give us a tour of the infusion center and what to expect.
It is so strange having Hannah be so “popular” among the doctors. Where at one point we felt like she was being neglected, we now feel like she is being fought over. Even having Dr. W. be there with answers to every single one of my questions within a few hours and showing such a true compassion for Hannah has been a godsend for us. Just knowing that she is in the hands of two world-reknown Gaucher experts and another expert in lysosomal storage diseases is just a nice comforting blanket for us. (I hope I don’t regret saying this!)
We run into this kind of thing pretty frequently.
Almost all of the hospitals we’ve been to over the course of Connor’s life have been teaching hospitals. This is good because many of them have top-notch faculty and excellent care. On the other hand, some of time your child will be treated like an exhibit rather than a patient.
I remember one instance in particular in which we went to a neurology clinic. Connor’s brain is very, very unique, and many areas are smaller than they should be, formed differently, or missing. His brain looks so bad on the screen that neurologists are always stunned by how well he is doing. Combine that with a medical condition that is totally unique, and doctors get very, very excited.
Anyway, this neurology team asked if it would be okay if they allowed a couple of their medical students to observe while they did the examination. I cautiously agreed. It was like the floodgates opened. FOURTEEN students and five doctors tried to cram themselves into our tiny examining room, completely surrounding the chair where I sat with a suddenly terrified Connor, with some of them craning their necks into the room from the hallway.
I kicked everyone out. They should have known better.
On the other hand, the rarity of Connor’s condition has enabled us to jump to the head of the line on some waiting lists and talk to some doctors that we might not otherwise have been able to see, so it’s not all bad.
~Jess
We run into this kind of thing pretty frequently.
Almost all of the hospitals we’ve been to over the course of Connor’s life have been teaching hospitals. This is good because many of them have top-notch faculty and excellent care. On the other hand, some of time your child will be treated like an exhibit rather than a patient.
I remember one instance in particular in which we went to a neurology clinic. Connor’s brain is very, very unique, and many areas are smaller than they should be, formed differently, or missing. His brain looks so bad on the screen that neurologists are always stunned by how well he is doing. Combine that with a medical condition that is totally unique, and doctors get very, very excited.
Anyway, this neurology team asked if it would be okay if they allowed a couple of their medical students to observe while they did the examination. I cautiously agreed. It was like the floodgates opened. FOURTEEN students and five doctors tried to cram themselves into our tiny examining room, completely surrounding the chair where I sat with a suddenly terrified Connor, with some of them craning their necks into the room from the hallway.
I kicked everyone out. They should have known better.
On the other hand, the rarity of Connor’s condition has enabled us to jump to the head of the line on some waiting lists and talk to some doctors that we might not otherwise have been able to see, so it’s not all bad.
~Jess
The politics surrounding doctors is no less confusing and frustrating than the politics in Washington. I’m so sorry that in a time when you need to be able to focus on your daughter you’re having to play referee for two doctors. Dr. E sounds fabulous to me! Any doctor that’s willing to go out of their way to give your child special attention is definitely someone you want on your team. Our pulmonologist is the same way and it’s wonderful. He really helps me to feel like nothing’s being overlooked and for that I can relax. Any doctor, let alone specialist, who’s willing to call a parent of their own accord is unique in the medical world.
I hope the infusion goes smoothly and all the little bumps in the road with which doctor is doing what get sorted out.