How can they fix it? Well, there are two ways. One is a catheter through the leg into the heart where a clam shell thingy is placed over the hole and closes it up. This stops the blood from entering the other side of the heart. For the size of the one Lucas has, there may not be enough tissue for this clam shell to clip on to. If they do that surgery and the clam shell becomes dislodged, the outcome would be, in his words, catastrophic. Therefore, this surgery is not an option. Our last option is open heart surgery.
The difference between the surgery happening at 2 as compared to at 4 is reliant on if the symptoms of the ASD are effecting him. Weakness, extreme sleepiness, shortness of breath, poor weight gain.... Since his heart is working harder than a normal heart, it causes him to burn more calories and the most common problem they see is poor weight gain. If Lucas doesn't have any of these symptoms come 4 years old and the hole has not closed up, they will still have to do the surgery.
This is a really hard thing for me to stomach. I can't believe he is going to have to go through this. I know it can be 10 times worse. It really can be and I thank God everyday for my two healthy babies. I am grateful it isn't worse, but that doesn't make it any easier. Open heart surgery is such a scary thought.
Until then, we are going to continue to pray. Pray that he continues to grow healthy and strong and pray that the tiny "large" hole closes up. Pray for all the families going through this right now with their little ones and the families and children with the bigger obstacles. We also can't forget how fortunate we are and we must thank God everyday for the blessings he has sent to us.
3 comments:
Jenny, he is so lucky to have u as a mom. You will take care of him just like or better than the kids you.cared for at school. U did such a great job with them, that I know Lucas will be in good hands. Except.for this set back, you sound like u and ur family are doing great. I will be praying. Sharon barney.
Hi Jennifer, My name is Joe, or Paw-paw to Elisabeth Morrow, as I am Jessica's Dad. Jessica sent an email with a link and I feel it is important you learn a little more.
I have worked with cardiac patients for over 30 years and most recently with a very good pediatric cardiologist. Unfortunately, she is in Indiana as I am. Hopefully I can still provide some help. First, get a second opinion. Nothing is 100%, but I feel certain, from what you describe, you will get almost exactly the same story from your second opinion, but you will rest better knowing you know what is going on. Maybe more importantly, your baby will sense your reduced tension level and be healthier. I can tell you the ASD more often than not does fix itself over time. As you mention, the aneurysm, probably won't. Waiting until he is 2 or 3 or 4 only improves his chances of some self-improvement and chances of tolerating the surgery better. Right now, the "clam shell thingy" may be his best option, but in 1 or 2 or 3 or 4 years the "clam shell thingy may no longer be used as it could be replaced with a "new and improved clam shell thingy". Trust me, cardiac technology, adult and pediatric, is making changes every single day. There is a lot of money to be made by making a better clam shell thingy, so the medical device companies are ALWAYS doing whatever it takes to make theirs better. I also happen to know a couple of kids that had ASD's and I think one of them also had the aneurysm. I knew them before surgery. Both have had very healthy chilhoods. Some things they had to put off until after surgery, but both are doing great. As you mention, you have 2 healthy kids, treat them both as such. And remember, some momma's never get to take their child home and some ladies will never be momma's. Lucas may develop a little more slowly than you like, but the chances are very good he will quickly make up for it once he has whatever procedure is in vogue when he is ready. Each day the chances improve he may only need a simple outpatient "procedure" when it is time.
You must also understand, when a physician explains options, they are compelled to paint as ugly of a picture as they can. If the worst happens, they can say they told you it was possible. When better or best happens, it is very easy then to tell you have a "fighter" or "I had a feeling I was wrong, but I was afraid to give you too much hope".
I know you will stay in touch with Jessica, so be sure to let her know so she can tell me what happens in the next few years. Babies are for us to unconditionally love. Do what the doctors AND NURSES tell you, but remember God is helping too.
Joe Winterman, RN
We will continue to pray for lucas and your family. I hope you can find a support group in your area if not please let me know if you want my friends contact info, she might know of one in Houston
Post a Comment