Aili's Medical Update

So....Blah....Blah, Blah, Blah. That is how I feel right now. And really anxious.

A couple of Mondays ago Aili had a routine cardiologist appointment. Her appointments were getting further and further apart. We hadn't been to any doctor in 3 months. That was way longer than we have ever gone. It was nice. Well in that appointment they all commented on how great she looked. Then he listened to her heart. He told us that the murmur that he had been hearing had gotten quite a bit louder since the last time he saw her. He told us he wanted her to get an echo so that they could get a look at what is going on. We thought that was great, because she hadn't had once since right before she left the hospital in California.

So we headed down to UVRMC this last Monday for our 8 am appointment. We tried to be happy an positive for Aili. We were really nervous though. She was going to be sedated because trying to make a 9 month old lay still for 45 mins to an hour is pretty much impossible, and they wanted to get good pictures. It had been so long since Aili had been poked. I hate it when they give her IVs because they can never get it in the first poke.

Aili was super happy and in a good mood even though we had to wake her up to go to the appointment. That is till we had to pin her down for the IV. It just breaks you heart every time. It will never get easier. We tried our best distracting her. Luckily they got the IV in the second time. The tried in her food at first then put it in the arm. They had looked at the hand to put it in, but then made a comment about how she has so many scars in her hand that it would be too hard. How sad is that?

Once they got the IV in we headed downstairs to get the echo. Once we were down in the echo room they started the sedation medication. Aili was not happy. She was fine if I just held her, but if anyone else even touched her she would cry. Eventually she passed out. Her eyes were, closed but she still knew if someone she didn't want to touch her was touching her. The gave her an extra little does to get her to fall completely asleep. She was still do little moans here and there. Then we sat there in the dark room as the echo technician did his thing. It took around an hour. Then the cardiologist came in. He took a couple more pictures, then started explaining to us what he was seeing.



So they put a cadaver conduit and valve into Aili that leads up to all the reconstruction of her pulmonary arteries that take the blood to the lungs. So the murmur is coming from the area right above the valve. She has some stenosis (narrowing) from some scar tissue and calcium deposits  Is that surprising with all that was done?  I don't think so. I think it has happened a lot faster than they were expecting though. So what that is doing is causing a lot of turbulence in the blood and some back flow....and that isn't good, especially if it keeps getting worse. He told us that it is on the high end of moderate...not quite severe yet.

While he was telling us all of this showing us some of the pictures Chris was standing next to him asking a bunch of questions making sure he understood everything, and I just sat in my chair silent. I was so disappointed, kind of mad, and really trying not to cry. I wanted so badly for everything to just be fine, to look good, to be as normal as possible. But our reality just started flooding back in. All the bad/hard memories, all came back.

He told us that he needed to talk to the cath lab doctor up at Primary Children's and ask him his opinion on what they could do for her in the cath lab. He told us after he talked to him he would call us back to tell us what the plan would be moving forward.

Aili was a complete limp noodle coming off the medication. She just couldn't open her eyes and was so tired. We went home and I put her in her crib and she just slept it off til about 1.



Tuesday morning I woke up and just felt depressed and anxious. I tried to not think about it too much because we didn't really know what was going to happen yet.

Wednesday the Dr. called around 1:00. He told me that he had reviewed Aili's echo with the other doctor and that he thought they could definitely go in and do some stuff to try to help the situation. Ideally what they want to do is put a stent in where it is narrowing to open it up and keep it opened. The problem is that Aili has an abnormal coronary artery that crosses right behind the conduit where they would need to put the stent. It is a very important coronary artery....they call it the "widow maker". So if the stent puts pressure on the coronary artery that is bad and they can't put it in. So they will go in and balloon the area open, if it doesn't cause any problems to the coronary artery they can put the stent in, if it puts pressure on it, they can't.

Now if they can't put it in they will balloon it open for now. No one knows how long that will last. He said that if in the next couple months after it is ballooned it closes up again...then they we are looking at an open heart surgery to replace the conduit.

Now we knew that we were going to have at least one more open heart surgery to replace the conduit when she grew out of it, around 3-5 years. But this would be basically putting the same stupid size back in, and hoping that the same thing doesn't happen to it.

So....we need to PRAY, PRAY, PRAY, PRAY, that they could put that stint in. That the coronary artery will not be effected by it. That way we can push that next open heart surgery further out so they can put a bigger conduit in at that time.

We will be scheduling her cath in the next couple days. He said she will have it in the next few weeks.

I'm just sick to my stomach. I have tired to be really calm and positive, but it is so hard. This will never get easy. My sweet, sweet, beautiful baby....

The other night I asked Chris, "If I had perfect faith, could I heal her?" His reply, "Ya, proabably." Oh how I want perfect faith! I want to heal her so badly you don't even know! Last night I prayed and prayed for another miracle. Aili really has been so blessed, and I am so grateful for that. But we really need a big miracle again. I know God can give us this miracle I know he can. And I'm asking for it, with all the faith I can muster up.

As I started praying for Aili in my prayer with Chris last night I just said her name and started crying....and then I couldn't stop, I just cried and cried. I tried to keep it in, but I couldn't any longer. It was already 1 am but I knew just laying there I wouldn't be able to calm down. So I went and watch the Halloween episode of Ellen. I needed a few laughs. It worked. And then I was able to fall asleep.

So...for anyone who is reading this...that actually just read that whole novel of a post. I would ask you to PLEASE PRAY for my baby again. PLEASE PRAY that they will be able to get the stent in, that it won't cause any problems with that coronary artery, and that this will help the problem so that she doesn't have to have open heart surgery any time soon.

I may not have perfect faith, but I know with all of our faith combined this miracle can happen.