Thursday was our much anticipated appointment with Dr. Robert Fildes at INOVA Pediatric Specialty. Dr. Fildes is a pediatric nephrologist who has his office in the same group as our pediatric geneticists, Dr. Lewanda. He is not located in the hospital itself, so we did not get to meet with any other doctors or staff that day or see any of the facilities at Fairfax Hospital, but Dr. Fildes came highly recommended from several sources, so we were extremely anxious and excited to meet with him.
To give you a little back-story, when I initially started my research for a pediatric nephrologist, I found Dr. Fildes name on the Internet. I simply called his office and made an appointment for Nov. 10th. A few days later, Dr. Fildes name came up when we met with Dr. Lewanda. She was able to actually get our appointment moved up to Nov. 3rd. Later that week, we got the call about CHOP and they wanted to see us on Nov. 3rd. So I had to cancel Dr. Fildes appointment. The next appointment they had available wasn't until Nov. 30th! We took it because what other choice did we have?
Later that week during out meeting with Dr. Kher from Children's National, he suggested we meet with Dr. Fildes and deliver at Fairfax and that it was critical to find a high risk OB/GYN at Fairfax ASAP. But we weren't getting in with any doctor's at Fairfax until the very end of the month! So what does any sane, normal mom-to-be do you ask??? I walked over to Dr. Fildes office, pleaded our case to his nurse, and begged. Luckily it worked (after explaining the whole situation and that I could potentially go into labor at any time since I don't have any amniotic fluid) and they got us in for an appoinment on Nov. 11th, this past Thursday. In the meantime, we must have heard Dr. Fildes name mentioned a handful of times...from friends, aquaintences, and other physicians.
All in all, the appointment with Dr. Fildes was awesome. He was honest with us, but compassionate to our case, and it was clear that he could handle all the kidney issues Stephen would encounter in his life; from birth through dialysis and surgery, to transplant. He typically sees about 15 new patients (babies and children) a year with ARPKD, with varying degrees. But he was very honest about the lung and heart problems and that while he was clearly knowledgeable on the issues and the types of help that Stephen will need for his lungs at birth, he was not the expert we needed to talk with regarding whether or not Fairfax would be a good place to be with all of Stephen's conditions. Our discussion focused somewhat on a machine called ECMO; extracorporeal membrane oxygenation. ECMO machines are only used at the most advanced NICUs in the country and Dr. Fildes wasn't 100% sure if Fairfax has ECMO machines that could be used on infants. Fairfax has ECMO, but they are mostly used in the PICU (pediatric intensive care unit) and not the NICU.
Basically, ECMO is an machine that acts as an artificial heart and lungs. It's an extremely invasive procedure that removes from the blood from the baby's heart, oxygenates the blood, and replaces it. It removes carbon dioxide and replaces oxygen. Because it's so invasive, it is only used, a very last effort to save a baby and can have not so favorable outcomes.
So with the help of Dr. Fildes, the neonatologists, and perinatologists at the hospital, we would need to decide if ECMO is something we want to even include in Stephen's course of treatment after birth and find out from the doctor's about whether or not they think Fairfax is a good "fit" for us. Dr. Fildes has agreed to be our team quarterback and is taking the lead on assembling a team at Fairfax. The other doctor's we are hoping to meet with include Dr. Khoury, the perinatologist or MFM, and Dr. Robin Baker, the head of neonatology at Fairfax Hospital.
I heard from Dr. Fildes on Friday (how great is that?!?!), and we are anticipating to meet with Dr. Baker next week and hopefully Dr. Khoury by the beginning of the following week. Our goal is to still know where we will deliver by Thanksgiving. And as much as we loved CHOP and we know 110% they have the capability of dealing with all of Stephen's issues, we also know that staying close to home will have other advantages that CHOP can't offer. But as soon as we make our decision, you all will be among the first to know!!!