We went in with a hole in her heart and a leaky valve and walked out with so much more.
My processing has taken time, tears, cursing everyone and no one at all, and anger. Oh the anger has consumed me and it took me a while to place who and what I was angry at. So let me start with the medical side of everything before we delve into my emotional side, because those aren't going anywhere.
So when Lily was in the Cath lab, we found out she now has pulmonary hypertension, which is a new curve ball for me. Now this little present is from the leak in the mechanical valve. So first Dr.G tried to put coils in, which back fired, then he added a plug. It is exactly as it sounds. The picture below shows you what it looks like. I outlined it in orange for you so you can see it a bit easier.
Once the plug was put into place, the blood started flowing correctly again. She is no longer coughing at home, which most likely means her pulmonary pressures are going down, but we won't be able to tell that in an echo, only another cath will let us know for sure.
The VSD was non-repairable in cath, because in order to repair it, you go through the aortic valve. With Lily that is a no go because of her mechanical valve, you send a cath through there, the metal leaflets would break the cath and would kill her. The only way to repair the hole is to open her up, we are not opening her up for such a small hole.
But wait there is more. When Lil was a baby it was mentioned that she had mitral valve prolapse, but that it was so minor that it was nothing to concern ourselves with. So I filed it away, never truly forgetting about it, but doing my homework knowing, it isn't truly a huge defect, and she can live her life normally with it. Yet it was brought to attention again, and this time it was mentioned that it might be time we started talking a mechanical valve replacement there. All I could think is, "My child is going to have a bionic heart."
Why is this just now being brought up? Why hasn't it been seen on echos? Is it because her heart is backwards and really hard to see certain things? I have a million questions floating through my head and I have a month to wait until I can fire them off at Dr.R.
No here comes the doozy, the dino whooper, gut puncher, I cried, I screamed, I cussed, I've been so angry I haven't been able to talk with anyone about this.
The picture below is Lily's coarctation of the aortic arch, we fixed it during her first surgery with a vein from her wrist. The only time we worried about it was after her fourth surgery, right after we put the mechanical valve in.
What you need to understand is, they don't make mechanical valves for children, they only make them for adult hearts. So here is a 2 year old little girl, getting a 19mm valve (the size of a grown petite female) put into her heart. So when the blood was being pushed up through the aortic valve into the CoArch, it started to balloon. It put a massive strain on it, also know as gradient levels, and we worried the work done on the arch wouldn't hold. But to our amazement, things leveled out and that was the end of it, or so we thought.
So what you are looking at in the picture above , the marked areas in orange, is now the stenosis, aka narrowing. So the ballooning was done on the front end of the valve but everything comes to a crashing halt on the back end. We talked about if a stint was a possibility but it most likely wouldn't hold because it is at an opening. In normal patients they would worry about clotting, but in Lily, being on blood thinners, she would just throw the stint. So we would have to think of a different course of action.
So you take all of these things and you put them together, you have to ask yourself is it time for an open heart surgery, or do we watch and wait.
My anger comes into play with her arch, because that was a man made mistake. Please don't get me wrong though. I don't blame her doctors, I am not even blaming myself, even though God knows I did in the beginning, which is irrational. My anger resides in the fact that there is not enough research in pediatric congenital heart research.
My daughter is a very small percentage of children that have a mechanical valve. Are you telling me this has never happened before? Are you telling me there was no studies done, telling use this was a possibility we took, when we put it in. 1 penny of every dollar donated to the American Heart Association goes to Pediatric Research. 1 PENNY!!! How is Gods name is that fair?
We destroyed a fixed heart defect in a child, by trying to fix another heart defect that doesn't have enough research behind it. And I am angry because of it.
This valve has caused this domino effect of problems. Like the pulmonary issues, do you want to know what took us so long to get back to see Lily after cath? I didn't find this out until the next day. Her lung partially collapsed and no one told us, NO ONE!!
I continually pray, to help ease this anger, to let go of this anger, because I detest it, but I know it won't go away until I get answers. 1 month, I have to wait 1 month. I better figure out an inner zen.
Peace and Love