I Heart Haley: Update last couple weeks

These last few weeks have been extreme. I dont know how else to explain it, it has been stressful, busy, exciting, numb.....anyway there is alot going on.
Ashley is signed up for preschool, we bought her a little backpack today. She is very excited. Nicks parents are going to help with the girls in the morning and after school. I start work Monday. Nick and I will be carpooling, we are only 5 miles apart. Im excited about that. We can have some time hang out time. I am so excited and ready to start working. I got to go out and pick up some new clothes. Ive been practicing my businessy makeup. At the same time I am struggling with being selfish. I wont be at some of Haleys appts, to pick her up from school, to spend the day with Ashley. Its going to be great though. Grandma will be helping with the girls and daddy will get to be with them at doctor appts. Ok so lets get to the happenings of the past few weeks and whats to come.

So last week Haley had an MRI. She did great. The doctor is really impressed how well she does with anesthesia. The nurse had me take Haley to the MRI room, had I thought about what we were doing, I would not have went. Because I am there Haley has a hard time listening to the nurses and she trys to pull me to leave with her. She starts crying, now the more you see this the more you recognize when she is actually scared/upset and when she is just trying to get to me. This time it was a mix of the two, so I knelt down next to her and told her straight, you can do this, easy peasy, we need to do this,.....then I started balling (pretending of course) with all the doctors and nurses in there, here I am crying, exaggerating and flailing about. Haley starts laughing, there, got it, she laughed therefore no going back. I brought her back and got to watch as she was put to sleep. The nurse had her in a type of loving head lock holding the mask to her face. She started telling her about disneyland and Haley passed out, at that point I asked the nurse if I could get some of that for home. They laughed, as I waited for an answer. Hahaha I was kidding....of course.

After the test, the doctor let me see some of the pictures and video. It was so cool. If I can get my hands on some of it I will post it. I cant even try and describe it, it would probably be more confusing then anything. They got good pictures and said it will be very helpful for planning a surgery.

Last Friday we met with the surgeon, well we met him then talked mostly with his team. They talked about closing both holes, but putting a hole in one of the patches. This would be a pop off. Also this will make it possible to close that hole, if that ever becomes a possibility, through the catheter. That will make it so we dont have to open her chest twice. He talked about wanting to put her on an IV med before, during and after. This med is 24/7 delivered with a pump. As far as I understand, It will relax the arteries around her lungs and make it easier on her heart when we change the dynamics by closing the holes. I have heard from other parents with children on this med that it works, most say there kids are still here because of it. I believe this is used as the last med before a lung transplant. They (and the drug website) say that 80% of users experience pain at the site from the medicine. Sometimes so severe that narcotics are needed or discontinuing the med. She would have an iv port either a central line ( in her chest straight into her heart) or a subQ line ( iv going under the skin, Ive seen it on a stomach). So God has a plan, he knows what he is doing. We will see what needs to be done. They said that they will be talking about Haley again in the PCH meeting over the next few weeks and come up with a final plan.
A nurse then explained how a surgery would go and what we need to do leading up to it. There was a medical student in there too. I snapped a picture of him showing Haley how a heart works with a 3d heart they had. It is the sweetest picture.

I used to be worried about what people think about the pictures I take, but now I dont care. I am so glad I didnt let that picture get away. :-)
We made an appt for Feb. 22nd.
The nurse called Tuesday night to schedule a lung biopsy. I asked why. The surgeon actually got on the phone and explained his reasoning behind it. He said they will go in through her chest grab a piece of lung and send it to the lab. They are looking for the amount of damage to her arteries, this will also tell us the degree of severity of her PH. It will help them calculate the risks and help with a long term strategy. Getting more info to give to the experts so we can be as informed as possible to make a decision. So that is Wednesday. But the nurse also wanted Haley to come in Monday for pretesting. Again I asked why. She said they do an EKG, chest xray, and blood work to make sure she is healthy and make sure its the best possible situation to have Haley go under anesthesia. Ummm, why have we not done this before.... So I will be at work, Daddy has this one, and I am surprisingly ok with that. I do like to be in control, especially when it comes to our kids. God is really helping me grow with this one.

Oh and we did Haleys monthly blood work. And I have to tell you she did AWESOME! I told her right when the needle goes in she needs to take a deep breath. And she actually did it! Zero tears, zero fighting, it was so great. I almost started crying because I was so proud.

Here is a picture of a normal heart, you can see the 4 chambers