We were finally able to have a consultation with Dr. Bove, one of the top Doctors in the US that perform the Double Switch surgery! Dr. Bove was there along with Dr. Scholl, the surgeon that did Susannah's first surgery, and then another cardiologist, Dr. Bibevski. When Susannah has her surgery they will all three be doing it together. Dr. Bove has done over 140 Double Switches, and Dr. Scholl (as of last January) had only done 3. In the world of Double Switch surgeries, there are four doctors, that I have been able to find, that have done a significant number of these surgeries. The top two are Del Nido in Boston and Bove in Michigan. I cannot explain how thrilled I was to hear that Dr. Bove would be collaborating with Joe DiMaggio!
https://www.youtube.com/watch?v=p1dsI1t5Xek&feature=player_embedded
Our visit went well. Dr. Bove gave us more information about Susannah's heart that we hadn't been told before. The more of these patients he sees, the more convinced he is that the Double Switch is the thing to do, and sooner rather than later. With Susannah already having a significant tricuspid regurgitation (a sign of heart failure), her heart would inevitably go into complete heart failure and at that point she would require a heart transplant, which has an entirely new set of problems. The only other option is to do this double switch. From the research we've done and questions we've asked, we're convinced that this is a surgery that Susannah needs to have done, and Dr. Bove was our first pick of surgeons to perform it.
Apparently, the PA band should not be left on indefinitely or too long, because it can cause the valve before it to become malformed and not function properly. He feels her surgery should be done within the next 3-6 months. The numbers on the ECHO look good enough to go ahead with the Double Switch, but they will do a cardiac cath to get a more accurate reading of the pressures, and such, before they go ahead with the Double Switch. If the numbers are high, then we need to do the surgery soon, if they're just right, we can play around with a few months, and if they're low, then they'll do surgery to tighten the PA band.
When they do the Double Switch, they'll go ahead and put in her pacemaker. They usually leave the chest open for a couple days for swelling, drainage, etc., and depending on how well they can get the leads on they'll either put it on after they finish the DS, or when they go in to close the chest. I think that's all for now. My notes are in the bedroom where Leigh's sleeping, so I'm going to wait to double check.
So, our next step is the cardiac cath, which is supposed to be an outpatient procedure, possibly an overnight stay. They're going to let the cardiologist know what we discussed and then somewhere after that the hospital will call me to make an appointment. I don't know if that will be after our next cardiologist appointment or between now and then. Her next appointment is the middle of Feb., so I guess we'll just wait and see, and if I get antsy I'll go ahead and call! :)
Praying for your sweet baby girl and for all of you!
ReplyDeleteThank you April!!!
Delete