Answers, kind of….

I know that lots of people have been waiting to hear, and we did finally see the cardiologist today. We had an 8:15 AM appointment at Children’s Hospital. When we went in, Ben got an EKG done first (which prints out a picture of his heart rhythm, for those who have never had one); and then he had another ultrasound of his heart. Scott and I got to see the pictures, and the ultrasound tech was great about telling us what we were looking at. Honestly, I don’t know how you learn to understand those things…it all looks black and white and fuzzy to me. 🙂 Ben did lots of flirting with all the ladies (Typical, just typical) and even batted his eyes at Dr. Petterson (his cardiologist) a few times.

Here is what we found out. The fetal duct (Ductus Arteriosis) in Ben’s heart that was supposed to close (if you are not sure how this works, go back a few entries….there is a full description as we understand it) did not close completely. What does this mean? Well, the third heart defect is the constriction around his aorta (this is the artery that supplies blood to his lower extremeties). This is very very severe, so we originally thought that the lack of blood to his lower half and the fact that his heart would have to work so much harder to compensate would lead to his decline. The partially open fetal duct, along with the constricted aorta are kind of doing the job right now, hence Ben’s plateau phase. The blood pressure in his legs is much lower than the blood pressure in his arms, and the doctor said it is harder to feel a pulse in his femoral arteries (these arteries run along your leg. You can feel the pulse here when you feel where your legs meet your body). From this information we can see that there is less blood going to his lower half, but right now his body is compensating for it okay. The other two heart defects are doing what we knew they would. Your heart is designed to keep blood that has oxygen in it seperate from blood that has no oxygen in it yet…the two heart defects within his heart (the hole and the common artery coming off the top) mean that the oxygenated blood and the non-oxygenated blood in his heart get all mixed up. This means that his heart has to work a lot harder to get the blood with oxygen delivered to his body. This is why Ben breathes a lot harder from time to time, and turns blue. Nothing about the anatomy of his heart or the heart defects has changed, and we did not expect that it would. Scott and I had kind of thought that something like this was going on (something like this meaning the duct not closing or not closing completely). All three heart defects are still there, they are not going to get better, and they have not changed. Surgery is still not an option. What has changed is how Ben’s body is dealing with this…it is not what we expected.

What happens now? Well, pretty much what has been happening…we live our lives with Ben to the fullest extent we can. Dr. Petterson said (as hospice has said, and as we have been doing) to let Ben direct what we do. If he is doing well, then take him out, go places, have fun. If he is not having a great day, then stay home and make him comfortable. We know he is doing better in the carseat, so it is easier to take him places. It is unlikely that he will see his first birthday, but again, with Ben, we just never know. The unexpected is commonplace with him. The Doctor said that most likely there will be some event that will push Ben’s heart into a decline. It could be that he has a choking or coughing fit while eating, that he gets too tired, that he catches some virus or bug that makes him sick. Eventually his heart will just decide that it doesn’t want to work this hard anymore, and it will gradually stop doing the job. We do not know what will make this happen. Scott and I have decided that we will not let this stop what we do with him. Ben deserves to be treated like a normal kid, and we brought him home to live, not to be a china doll that we tiptoe around. So for now, we can live with him and show him this great world.

So what was the first thing we did? We went to fish fry, of course. 🙂 Ben, Scott and I met the family for fish tonight (happy Good Friday!). Ben had a great time…well, he slept…but it was good to get out. We are excited to go out on Easter. Tomorrow will be a quiet day at home.

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We took Ben out yesterday for a looong walk…then we gardened and he snoozed in his chair. This is the only hat we have for him with a brim…it is waaay to big. 🙂

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Ben’s first Easter Basket, courtesy of the kind folks at Children’s Hospital. Wasn’t that nice! Of course, the stuffed animal looks like a duck, but has ears and body like a bunny. I don’t think Ben cares. 🙂 He will like the bright colors.

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3 Responses to “Answers, kind of….”

  1. Anonymous Says:

    I’m so proud of you!

    I just want you to know that I am so proud of how you are handling all of this with such complete honesty. For so many, the temptation to look for a “miracle” would overshadow the truth… that having Ben this long is the miracle and you need to take in every moment with him. You have allowed others to really understand what is happening with him, and with the family, and that takes a tremendous amount of courage.

    By being so honest, you have made my job as “information pipeline” so much easier. I know the best way to talk to people about Ben is to be honest, even if they do not want to hear the truth – meaning those who think he has “healed”. I can explain to staff and students that Ben’s body can compensate, but to “heal” is impossible. And though many don’t like when I say that, they are starting to understand that enjoying life is more important than living in a bubble and that experiencing is more important than just wishing. When I think about how differently I view Ben compared to people’s perspectives of this experience, I know it is because I have accepted what his condition is and appreciate the here and now – and I could not have gotten to this place without the modeling you have done of that. Ben is here, and life must continue as normally as possible so that he, and you, can enjoy it. You all deserve that.

    I will see if I can get someone to watch the kids this week so I can come visit while we are on vacation. If not, I will try to come by again on the weekend… unless you want to bring Ben to visit at my house!

    Love,
    Kim

  2. Anonymous Says:

    Friday

    Thanks again for keeping us informed.. I am pretty sure knowing you guys, that you expected to hear exactly what you heard from the cardiologist..It doesn’t take away the fact that you are doing an unbelievable job of being Ben’s Mummy and Daddy and that you will continue to do so for as long as possible..Happy Easter Ben, we love you xxoo Trish and Kev

  3. Anonymous Says:

    Cute Ben

    Love the hat! I also love all his hair. I’m so glad you got an update on his heart and are getting out with him. His smile picture a few days ago is priceless. Love always, Dawn

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