The teams from UCSF and UCD conferenced today. I got a call around 10:30 from our cardiologist. The consensus seems to be that Drew can and should have a two ventricle repair! This is wonderful news, what we've been hoping and praying for for the past four years. You'd think we'd be jumping for joy, but things are complicated. We are confused and are still seeking out second opinions. Drew's records are still being collected to send to Dr. Hanley and should be sent out by next Monday. We have also made an appointment for a consultation with Dr. Raf, a surgeon at UCD, on February 11.
The concern is that his surgeon at UCSF has had two chances to do a repair on Drew and hasn't done it yet. Which makes us wonder why he hasn't done it, and if he would do it this time. It raises a lot of issues for us. If all the doctors say the same thing this time, how do we choose? If the two new doctors say that they could have done a repair as an infant, does that mean we should leave the hospital, surgeons, nurses, and staff that we've come to know and be comfortable with? Will insurance pay if we go to Stanford? If Dr. Raf can do the surgery at UCD, why did we get transferred to UCSF when Drew was an infant? Why wasn't he our surgeon to begin with? As you can see, there are more questions than answers and we are just trying to figure things out right now. As usual there is more WAITING. I hate waiting. Perhaps that is the lesson here. Learn how to wait.
Anway, Drew stayed home sick from preschool today, but now I am wondering if he is really sick. He's a little sniffly, a little more whiny, has had an occasional low fever (does 99.5 even count as a fever?) and that's it so far. I guess we're better safe than sorry, but staying cooped up in the house with the kids in this weather is no fun. We've seriously been watching movies all day today!
Drew's birthday is coming up in less than two weeks and I still have no plans for a party. I have a great idea for a party, but the place is not calling me back, and is seeming like it isn't meant to be. I might have to throw something together at the last minute.
Drew
Drew is a happy 7-year-old who loves his family, his friends, and everything Star Wars! He was born with a CHD, specifically interrupted aortic arch, VSD, hypoplastic aortic root and DiGeorge Syndrome. He has had three open-heart surgeries, the most recent was in May 2008 at Stanford. He is so strong and brave and we are very proud of him.
Ava
Ava is a spirited 5-year-old girl. She loves her family, friends and climbing, jumping and dancing. She brings us a lot of joy and a lot of drama! She is heart healthy. We love to see all the adventures she has!
This is how Drew's heart is now!
One and a half ventricle repair 1) VSD closed with a patch 2) Conduit from right ventricle to pulmonary artery . Drew still has the SVC connected to the PA in the upper left. Thank you Dr. Hanley and Dr. Mainwaring!
3 comments:
How about a 3rd opion with Dr. Mainwaring. Just a thought, see what he says.........
Love ya" and I am so happy for you!!
The consensus about a bi ventricular repair is excellent news. To be honest, I am not clear what the plan was with Drew but with prenatally it was suspected that Wren had interrupted aortic arch and since his LV was borderline we were told it was uncertain which approach (bi or uni-v) would be possible.
When he was born with a critical coarc and hypoplastic AA we went with that surgery, and thankfully his LV has coped with the flow. Still, it was very touch and go whether our surgeon would do that vs the other repair. By contrast, our consult with Dr Hanley was that a bi-v repair was expected.
I have heard great things about Dr H, particularly in the context of treating small babies in the neonatal period which could explain his confidence in doing a single, early, repair.
Can you cardiologist make sense of the questions you have? Give some perspective? I feel it may be a case of needing another cardiologist to explain where the surgeons are coming from and speak to their experience with each institution.
Shannon
WOW...your mind must be spinning!!!
You know we LOVE Dr. Hanley...but, something is said for a hospital where you already know all the nurses and feel comfortable. I hope you find all the answers that you're looking for soon...then a plan can be made...and little Drew's heart can be fixed. I'm not looking forward to surgery's at that age. You sound like you've got a good handle on things and asking all the right questions.
Good luck!
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