So, tomorrow is the big day, taking a big step in our CPT journey. We are meeting with our first doctor at Shriners Children’s Hospital, and I’m not going to lie – I’m nervous. I’m hoping for the best, but I honestly and truly believe we’ve been assigned to the wrong doctor. The one we have now, Dr. Vendant Kulkarni, says on his profile that “His work is devoted to treating children with all types of pediatric orthopedic conditions and injuries.” This seems very general to me. Also, precious little information is out there from other sources about this guy. Versus another Shriners doctor there, Dr. Jennette Boakes, “Areas of special interest to Dr. Boakes include long-term outcomes of lengthening verses amputation for congenital limb deficiency, muscle strength recovery following lower extremity surgery, muscle adaption during limb lengthening, and timing and planning of deformity correction by growth manipulation.”
I really want to see this 2nd doctor!!! She sounds like a great fit! Plus she did her residency at a Salt Lake Hospital known for treating congenital deformities.
But we’re assigned to Dr. Kulkarni. So, we’re resigned to seeing him, and honestly, I feel like the reason we’re seeing such a general catch all, is because she’s being seen for “leg pain” which, I’m sorry, is just beyond stupid. But, I don’t really know where the problem lies, so I’m not going to complain. We’ll get it all straightened out tomorrow, and quickly. Maybe, MAYBE we might even be able to get in an see Dr. Boakes tomorrow? We shall see. One day at a time.
In the meantime, here is our list of questions for him.
1 How long have you been treating CPT?
2 How many patients have you treated in that time?
3 How often have you achieved union?
4 How often have these kids refractured after achieving union?
5 Under what circumstances will you recommend amputation?
6 How often have you recommend amputation for your CPT patients?
7 What brace do you recommend for Amy? How far up the leg should it go? Why?
8 How long will it take to make, and when can we start?
9 How can we protect her leg in the meantime?
10 What else (if anything) to you recommend to protect and/or strengthen the bone? What about the leg muscle?
11 Are there any daily activities that we should limit?
12 Should she wear the brace during sleep, swimming, and bathing?
13 What is the plan if she fractures?
14 How do you feel about telescoping rods? Taylor Spacial Frames? Why?
15 If she stays fracture-free, how (and when?) do you plan to straighten the bone?
16 What if we begin to notice a discrepancy in leg length or foot size? What then?
17 What do you think of Dr. Dror Paley’s method for treating CPT?
18 How often will we take x-rays and get new braces? Will that be done here? Or somewhere in our city?
19 What about physical therapy?
20 What sort of outcome do you see for Amy at this time?
21 Do you think that you are the right doctor for Amy, or do you think Dr. Jennette Boakes might be a better fit?
I can’t wait for tomorrow. FINALLY! We are doing SOMETHING!!!
