Day 25 and Two Surgeries Down

Avery completed her second successful surgery today.  This one was on her heart to close the duct causing her heart murmur (PDA) by applying a small metal clip to the duct.  You can see in the picture where she was attacked by Lord Voldemort.  As yesterday, it was a bit nerve-wracking to be in the next room and only be able to guess what was going on.  Soon after her surgery, she seemed to be doing really well and was able to have lower ventilator settings.  The positive effect of this change will not all be immediate but will take time.  I think we will see some positive effects over the next 48 hours, but more telling will be what happens over the next few weeks.  Optimally, she will begin to improve to the point where they can take her off the ventilator and also begin feeding her more food.

Wren had a rough day as well.  The last few days we have seen her ventilator needs slowly increase and her condition slowly get more difficult.  Our doctor today met with us to revisit the conversation that she still seems to be in an unsurvivable situation that could lead to a slow but eventual decline.  She told us it would be good to begin talking about when and how we would want her to pass, since it seems almost positive that it will happen.  Later, she consulted with another doctor to try and find if we had any other options whatsoever, and they found a slide in the x-rays that seemed to show Wren's left healthy lung with the bronchus stem going into it at a fairly reasonable angle compared to what they would expect.  Based on that one x-ray, they decided it might be worth trying to fish her current breathing tube into that stem and into the healthy lung to see if they can stop the effects of the blebs in the right lung.  We thought about it and discussed it and decided it would be worth trying, though it's not even clear if they were successful whether she be able to successfully oxygenate her body with the one lung.

Two doctors and nurses worked together to try and find a way to blindly fish the tube in without a camera, and they used x-rays to see if they could visualize the tube going in the right place.  From the next room we watched trying not to be anxious as the first try was unsuccessful.  After the second try, the doctors and nurses reviewed the x-ray and very quickly said "Oh, Yeah!!"  Then our nurse gave us a thumbs up, Shannon said, "They did it..." and we were then crying like a couple of sissies.  Here's a picture of the successful insertion:


The very fact that they were able to pull it off was a miracle.  However, we know that she would still have a rough road ahead assuming they are able to get her to stabilize with the one lung.  As I left, her CO2 levels were high at about 85, and her oxygen was running at 97%.  There is not a lot of wiggle room there.  After this, we know that we have done all we can do, and it really is in God's hands.