Monday, October 19, 2009

Eden Update

Larry and I took Eden to see her cardiologist this morning. We've got good news and I won't call it bad news, but it's a prognosis that I would rather not have to face.

The good news is that Eden's EKG was great. She cried through the whole thing (it was nap time) So it showed her with a little stress, which for this test was not a bad thing. The doctor said the EKG looked great, but so did the one they took in the ER less than 5 minutes after the SVT episode. She has to be in a tachycardic state to get a different reading.

One of my major concerns was if the SVT edisodes could have damaged her heart. He didn't think so, Which is a BIG relief!

The medication that Eden is on is supposed to keep these tachycardia episodes from happening. She's doing well on the medication with no side effects. Her medication levels look great on the EKG as well. He also told us we would not have to have her blood tested every six weeks like the pediatrician wanted. The levels can be checked through an EKG done in their office every 6 months. That is also a big relief.

Now the not so fun part. We decided that we would keep Eden on the medication for the next year or two. ( sometime between the ages of 4 and 5.) We will start to wean her off of the medication. Then Eden will undergo a test that will try to trigger an episode. If SVT occurs then they will do ablation therapy to destroy the bad areas of her heart that trigger the tachycardia. This is a heart cathetherization surgery that will be done under general anesthesia. Thankfully, this is a one shot deal. They will do the cathetherization immediately after the test if it is necessary, So she will only have to be under anesthesia once.

The reason we decided on this course of treatment is that there is a 10% chance that Eden will outgrow this condition. We wanted to give her the time to do that. Plus, she will be more verbal and better able to communicate her heart issues more clearly in the future.

So for now, we're going to enjoy our sweet little girl. The doctor said not to make ourselves crazy following Eden around with a stethoscope or limiting her activity. She can play and run around like a normal toddler. We just have to watch for signs of SVT.

This is something that I do not want to consume my thinking or allow me to become fearful of Eden's future. It's more than likely that she will have to have this heart surgery. BUT we never know what this time and Eden's heart can do. So for now we will make this a daily prayer. For me it's easy to remember twice everyday for the next two years as I give her medication. I will pray for the Lord to heal her heart, to make it strong. My long standing prayer has been for God to be a in Eden's heart. I have always prayed that in a spiritual way, now it is in a literal ways as well. We have faith that whatever happens. God is in control and we pray He will be glorified by Eden's life and her fast beating little heart :)

1 comment:

Jenn said...

Wow, that is a lot for you parents to take in. I'll be praying for Eden...that God will bring to her complete healing!!!