Back in July when I first got my hypermobility diagnosis, I asked Dr. Beals if she would be willing to see and treat my children. She said that she doesn’t normally see children, but that she would make an exception in our case in order to keep us all under one roof as we learn more about our variant of the disorder. I called Dr. Joe‘s referral specialist, requested the five referrals to Dr. Beals for suspected hypermobility, and waited for the appointments. Dr. Beals has a months-long wait list for new appointments, so I expected to be waiting a while.
Last month, Dr. Beals’s office staff called me and said that she had changed her mind. She didn’t want to see my children herself, but she wanted to send us to University of Michigan’s pediatric rheumatology department. I asked a lot of questions, because I was very disappointed to be splitting the family up and traveling across the state like that, but Dr. Beals’s staff reassured me that she had referred to this clinic before, and they would treat my family the same way Dr. Beals herself would.
The next three weeks were spent playing phone tag with Dr. Joe’s referral specialist, with voice mails and missed calls and her not even being in the office when I came in with my kids. Finally last week we synced up and she got the referrals going to U of M. This morning, I got a phone call to schedule appointments.
The phone call was from U of M genetics.
Baffled, I tried to find out how we’d gotten here. Apparently a Dr. Fleck in pediatric rheumatology decided that we needed to go to genetics instead. The guy I spoke with in genetics said that they don’t really do treatment, so we’d have to bounce back out of their office anyway, and when I mentioned that I had one child already in need of chronic pain management he said that would be yet another clinic. Now we’re looking at taking five kids to three clinics halfway across the state, and none of the clinics are going to see everybody on the same day like Dr. Trese does.
Brian called while I was on the phone, and when I called him back to explain all this, Kender was eating his oatmeal and singing/humming Nickelback’s Burn It To The Ground. Right when I finished the explanation, Kender suddenly busts out really loudly with, “That shit makes me bat-shit crazy!”
Yes, Kender. Yes it does.
What I really need right now is to get Dr. Beals, Dr. Kozlowski, and this Dr. Fleck to get on a single conference call and hash out with me what everybody is thinking and what needs to happen. We used to get this in the NICU. We got enrolled in a study when the triplets were born about coordination of care, and as part of that study, once a week we got to sit in a conference room with all of the various doctors and specialists treating the triplets. The doctors explained what they were doing and how the triplets were handling life, we got to ask questions, and everybody left undoubtedly on the same page.
I think we could use a little of that kind of coordination today.