Saturday, April 13, 2013
Tuesday was little A's cardiology appointment, my mom came with me for this one and I am glad she did. The morning started out ominously. It had snowed that morning and we barley made it due to three car accidents on the way. When we finally got there a few minutes late we were first sent to have his chest x-ray. After the x-ray we went back to cardiology and he was taken back to have a sedated echo.
We were told the medicine would make him take a nap. If only he wasn't so stubborn I imagine that would have been true. But he fought it a lot.The medicine was given by an IV in his hand (his poor little hand is still bruised). He would start to fall asleep and then would start skipping breaths causing his numbers on the monitor to drop, we think he was scared I could not stand next to him, not enough room. He would then start to scream his head off after. They did give him oxygen and had a mask an bag ready to go if he kept doing it. He did on and off but they never did need to use the bag. He also kept kicking up one of his legs, the one that had the blood pressure cuff on it. he didn't care for it at all. When that little leg came up it was hard not to laugh a little. It took at least an hour for them to get all the images they needed. During that time the did a four point blood pressure check and an ekg.
We were then sent up to recovery to have him monitored and make sure the drugs in him were not causing anymore problems. They wanted his oxygen levels to not drop for at least a half hour. I held him the whole time we were up there and he slept peaceful, no fighting just slept with no dips in his levels. If only Mommy could hold him during his echo it would have been much easier, but I could not.
After an hour he was released and we headed back down to Cardiology to talk with his Doctor. By this time we had already been at PCMC for over4 hours and had not been able to call anyone with an update. The cell phone reception in that building is awful. After waiting for a bout a half hour the doctor finally came in and talked to us. Aiden's coarc repair is good no more narrowing! The good news unfortunately ended there. The hole in his heart (ASD) has gotten bigger and it is restricting his growth. Because of this they want to have it repaired before the end of this year. In the past I was told it could be repaired by a heart cath but not anymore, its to big. he will need open heart surgery sometime later this year. his doctor is getting in touvch with the surgeon who repaired his heart the first time to set up a date. maybe next week, not sure when we will find out when it is to be done.
He also has a hole in his neck and a bump caused by the surgery we are going to see a dermatologist and this should hopefully be fixed at the same time as his heart surgery.
We have not told Connor much about this yet, but he knows something is going on, just last night he started crying a lot. After probing him he finally said he didn't want Aiden to go back to the doctors, he really loves his brother and this is going to be really hard on him. I'll admit I have not been very happy since learning about the surgery I knew he might have needed one but not for a few years and no OHS. I am trying to get used to the idea that he has to have more surgery and could be up there for a week. I feel like I got hit by a truck earlier this week, just in shock.