Sunday, January 23, 2005

Surgery Scheduled for 01-31-05

A huge "thank you!" to all of our friends and family who have sent cards, gifts, made phone calls, and prayed, and are continuing to pray, for Bailey. You have all been a great comfort to us, but our comfort truly lies in God. We do not know what the future holds, but we know Who holds the future.

Bailey's surgery is scheduled to begin at 7:15 a.m. - barring any unforseen emergencies of another patient. The most time-consuming part of the surgery will be getting through all the scar tissue from her previous 2 surgeries. The doctors have said it is not unusual for it to be early afternoon and the surgeons have still not made it to the heart. The procedure of removing the scar tissue from the inside of Bailey's left ventricle is not expected to take very long, but then they will take their time getting her off the by-pass machine. If her heart tolerates the surgery and they can get her off the by-pass, our hospital stay is expected to be about 2 weeks. If they have trouble getting her off the by-pass, the surgeons will hook her heart up to a ventricular assist device (they've chosen the "Berlin Heart" - see below for more info). This VAD will either allow her heart time to heal and then it will be removed, or it will show the doctors that her heart is not going to recover and they can then put her on the transplant list. If a transplant is necessary, it will be a heart transplant (as opposed to a heart/lung transplant) since the VAD will have allowed her lung pressure (which has always been very high) to come down.

I will try to post daily to this site after her surgery so all of you can be kept up-to-date, as I know you are all very anxious.

As for the Berlin Heart: This is a device that has not yet been approved by the FDA for use in the U.S. The Riley surgeons have been working with people in Berlin to try to accomplish this. We have VAD's over here in the U.S. but they only come in adult sizes - the Berlin Heart comes in 3 or 4 different pediatric sizes, making it much for efficient in pumping for children and less risk of clotting and other mechanical malfunctions. Riley has asked us if we would participate in a documentary about the Berlin Heart that a news crew from the Speedway is putting together for public awareness. We did not hesitate to agree to help, but we confirmed up front that no one would be "mad" at us if Bailey ended up not needing the device -- which is definitely what we are praying for! I'll let you know what evolves here.

The scar tissue in Bailey's left ventricle was a result of her original defect -- aortic stenosis. It was formed in the womb. The doctors have known it was there and have been keeping an eye on it for 12 years now. I think they were hoping it wouldn't cause problems, but as Bailey's heart has grown, the scar tissue has reached its limit and will not stretch any further. They say the rest of her heart is in great shape -- even the valves that they repaired nearly 9 years ago. She had an irregular heartbeat back in April '04 (atrial flutter/fibrilation) at which time she had to be cardioverted (shocked) back into rhythm at St. Vincent. Our insurance has thankfully agreed for Riley to take over since a transplant has been in the picture as a possibility, and St. Vincent doesn't perform transplants. We have recently been told that children born with aortic stenosis do not normally live past infancy. This must be the reason why the surgery that Bailey is facing now doesn't have much research out there for the doctors to review. We're pretty much in unchartered territory. The cardiologist believes and is hopeful that the surgery will work, but I think the surgeons are thinking maybe not. It will be interesting to find out what God thinks.

I love you all, and we truly appreciate everything you've done for us and will do for us in the weeks to come. Please continue praying -- Angie


Blogger Aunt Vickie said...

Hi Bailey - they tell me you're waking up. I tried to peek in the window today and the pull the curtain in front of my face. Trying not to take it personally. :) You'd better hurry up and get to a room where Cody can see you. He's driving me crazy with all his questions. You can probably answer them better than I can. I'm with Aunt Robin, I think the Berlin Heart should be known as the Bailey Heartin in the USA. There couldn't be a better name. We love you dearly and can't wait till you're up and moving around. See you tomorrow.

3:17 PM  

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