Bionic Girl is Back

 Lily's surgery was a10 hour long event, that kept us on the edge of our seats, along with the next 24 hours afterwards. We were taken down to pre-op at 7:30, as she was slotted for an 8 am surgery. She did good until they came to take her, then she looked at us and started crying and said, " I want to go home." She repeated that several times, until Child Life came in, and helped her find somethings, to take her mind off of what was about to happen. Child Life truly never gets recognized for the work they do, how great they are with the kids, and how much us parents appreciate them. 

After she was taken to the O.R, I'm not even going to lie, I went back to the Ronald McDonald House (RMH) and crashed. We got the call that she was off of bypass and was being closed up, that she would be up to her room in about an hour or hour and a half, this was around the 8 hour mark. So we made out way back over to the hospital, so we would be there to meet her surgeon. Well that hour and a half mark came and passed, so I went to check on her status. She was still in procedure, they said they were having problems trying to get her bleeding too stop. 30 mins later, we were shown to a conference room, so we could meet with her surgeon.`

The above photos show the David procedure, which is what we anticipated to have done, what we were truly hoping could be done. It would have saved the pulmonary valve, that was in that aortic position, but it wasn't the valve leaking at any of the suture lines. Instead, it was the leaflets opening, but not closing completely, so we were almost back to the beginning of her ORINGINAL aortic valve. For those who have just started following, Lily was born with an aortic valve, that only have two leaflets, instead of the three that you are suppose too, so when it opened and closed, the back flow was just as bad as what we were experiencing before this surgery. It was like someone went in and blew up a balloon and stretched it out a little bit, at that point in time, it was no longer savable, so the only left to do, was to put a mechanical valve back in.

I wish I didn't have too tell her. I wish I didn't have to see her face so angry and so sad at the same time. I really wish we never did the other procedure. Yet with all the wishes in the world, you can't fix everything, even though that's all you really want. 

While putting a 24mm On-X valve in, the pulmonary valve, that had been placed at her 6th surgery, had to be replaced also. A 17mm valve was placed on that side and "Should" last for a while. I chuckle at the word 'should' anymore. I throw that word away, when they say it, because it doesn't pertain to Lily, her heart has always done what it has wanted too, when it has wanted too. So when I was told the On-X

should last the rest of her life, I heard; The On-X will last, until Lily's heart decides it's done with it. We'll keep an eye on it and let you know when things go south. It sounds so negative, yet, for those who have followed Lily from the beginning, or know her history, KNOW, what I say is the truth. Lily came back upstairs with one chest tube, which surprised me, seeing I mentioned it several times, that if one wasn't put in on the right side, her lung would partially collapse. So after being upstairs 20 hours, they finally decided a secondary chest tube, would help. Thankfully they did it bedside. She was sedated but did not need to be intubated again. Her right, middle lobe, collapsed. Between 4:30-6:30pm, she dumped 550ml out of that tube. All I keep thinking is, if they would have just listened to me, we could have possibly avoided that all to begin with. You win some and you lose some, well in this sense, we lost, and then we won. All that matters is that it finally came out.

So Lily is not only on aspirin now but also back on coumadin. We need to get back to having test strips and lances at home for her. No bounce houses, trampolines, etc. We are back to life before the 6th surgery, and I am trying to let it all sink in, and not be angry myself, yet I am having a hard time. I am now questioning myself, when I question myself. Do I make the right decisions anymore? To do a surgery, only to ruin a perfectly good valve, and now have 2 problems, I have to stop and look at everything now. Will this fix be a permanent solution for the long run? There is no straight paths when it comes to cardiac kids and with Lily and her complex heart, it is more like a corn maze 2.0.

Yes, I just compared my kids heart to a corn maze. I think I have been married to a Nebraska man for too long, and all the corn, and Cornhuskers, just took over my head for a second.

Now this was just the blog post to bring everyone up to speed with her surgical ventures. I am on duty tonight, so I will make sure to get another one out, as we still so much else going on, and it would make this entry way too long for anyone to want to sit and read.

-J