We found out last year that Colton has an ASD (Atrial Septal Defect). The wall between his right and left atria has multiple holes that allow blood to go back and forth like a trap door. His right atria is dilated because of the extra blood allowed in that chamber. This is part of the reason his PCP was concerned he had Dextrocardia because an X-ray makes his right atria look enlarged...therefore, backwards in his chest. It is not backwards, just dilated. We were told that there's a chance those holes would close on their own over time. We went in for our annual checkup today and I was hopeful to hear good news. Thankfully, Colton was in good spirits. This kid has a heart of gold.
They did an Echo on Colton's heart. He was very wiggly, but he didn't cry. We just sang songs to him and he did really well.
Unfortunately, we didn't get good news....
Colton still has several moderate holes between his two atria. Blood is going back and forth more than it was a year ago. It's called "Fenestrated ASD's." Here's the picture she drew for me...
It's not something that requires immediate attention, but she said he will have to have a procedure done in the future to fix it. There are basically two options.
Option 1: Use a device to go through a vein in the leg to close the holes (Cath)
Option 2: Open Heart Surgery
At this time, she's not sure if Option 1 will work because he has several pretty good sized holes that need to be closed. She said that technology is constantly changing and getting better, so maybe in the future this would be an option, but she can't promise that right now. She wants us to come back in one year to check his heart. At that time, they will speak to a team to see if Option 1 will work for Colton. If so, he'd have that procedure done between Age 2-3. If that won't work for him, they will want to do Open Heart Surgery but would wait until he's at least 4 years old to do so. So...nothing would be done right away. This is something that he can live with for awhile and be ok. He has no restrictions and is able to continue all physical activity. He is asymptomatic.
Now....I did tell her about his lack of head growth and that we were meeting with Neuro-Surgery in the next month. She said that if for any reason Colton has to have surgery on his head, he cannot do so until his heart is fixed first. She said that there is a risk of Air of some kind getting in there during surgery that would cause problems with his heart?? I was a little confused about that...but....she said it is VERY important to let them know that he has "Fenestrated ASD's" and those need to be fixed first.
So, we are hoping we can just wait a year to go back to have his heart checked. At that time, we will decide the best course of action to fix Colton's heart. However, if we find that we have issues with his head that need to be fixed, then we will have to go down that path sooner.
This appointment was hard on my Mommy heart. This was not the news I was expecting. All I can do is focus on the positive. Colton is not in need of emergency surgery. Colton is healthy. Colton can resume all of his daily activities without any worries. God is bigger than the holes in Colton's heart. Miracles can happen. I'm gonna pray that Colton's holes in his heart close. I'm gonna pray that Colton will not need to have a procedure done. But if he does...we will get through it.
"The LORD is my rock, my fortress and my deliverer; my God is my rock, in whom I take refuge, my shield and the horn of my salvation, my stronghold." Psalm 18:2
I'm praying for that Little Buddy.
ReplyDeleteBig prayers for Colton and family. It is in the hands of God. Be strong
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