I wanted to give everyone an update on our "physician roll call" and schedule so when you hear a doctor's name, you can place it with their speciality and where and when we talked or met with them.
Dr. Jeffrey Elliott - Lindsey's OB/GYN in Arlington, VA at Virginia Hospital Center (VHC)
Dr. Jon Katz - Maternal Fetal Medicine (MFM) in Arlington, VA at VHC; it was Dr. Katz who originally diagnosed the PKD via "high level" ultrasound.
Dr. Amy Lewanda - Pediatric Geneticist at Inova Pediatric Speciality in Fairfax, VA. We saw Dr. Lewanda Monday, October 25th. She is going to guide us through the genetic testing to determine exactly how Stephen got PKD and if Bill and I are carriers. She'll also help us in the future to determine what are chances are of passing PKD onto future children and how we can prevent that from happening.
Dr. Christopher Harman - Director, Center for Advanced Fetal Care and MFM doctor at University of Maryland in Baltimore, MD. Dr. Katz recommended Dr. Harman as a second opinion. We see him Thursday, October 28th. Dr. Harman will hopefully perform a second "high level" ultrasound, fetal MRI and potentially take a biopsy to confirm the diagnosis.
Dr. Kanwal Kher - Pediatric Nephrologist at Children's National Medical Center in DC. We are meeting with Dr. Kher on Friday, October 29th. We were connected to Children's National through one of Bill and Steve's Secret Service connections. They have been wonderful so far and extremely compassionate!
Dr. Bernard Kaplan - Pediatric Nephrologist at Children's Hospital of Philadelphia (CHOP). We going to CHOP on Wednesday, November 3rd to meet with a team of physicians at the Center for Fetal Diagnosis and Treatment. We have heard amazing things about CHOP, and have been connected with them through a co-worker and her husband. They connected us with a nephrologist at UPenn who connected us with Dr. Kaplan and with a neonatologist (Dr. Eddie Chang) in Eastern PA who also connected with us CHOP. We are extremely excited about this appointment and can't wait to meet their team!
We've also been connected to a physician in Kentucky who helped a friend of a friend when her amniotic sac ruptured and needed an amnio infusion (replacement of the amniotic fluid in utero) and also to University Hospital in Cleveland through another one of Bill and Steve's Secret Service connections. So many people have heard our story and would like to help. We're just so grateful and lucky that we live in area with amazing doctor's and are able to get Stephen top notch care without traveling too far away from home.
Mimi and Poppy know that the old phrase "miracles happen every day" is often true. Surely Bill, Lindsey and Stephen could be one of these miracles.
ReplyDeleteWith everyone sending you their prayers and best wishes, something good should come your way.
We are happy to know the "roster of players" at each medical center, and just know that one of these brilliant doctors will come up with some answers.
All our love ....... Chuck & Kathy (Mom and Dad)