Update...

Well today was Laila's cath and EP study. The morning started at 5 am. Nobody slept last night worth anything because we all knew what the day held. Laila even slept terrible!! Of course a king size bed in a hotel for a family of 4 might have been a stretch! :)

When we got to the hospital Laila was so well taken care of. There was even an anesthesia nurse who brought her daughter home from China this past May. We got to exchange "in China" stories and it helped with MY nerves!! Jarrod told me I talked too much! But when you meet another person in real life who has walked this path its really neat to share and swap stories.

They gave Laila a nice little drink of something that made her loopy so she didn't even once look scared. When they rolled her away from me she was totally asleep so that was good. We were signing so many consent forms I didnt have a chance to panic.

When the procedure began she started having some SVT (tachycardia) episodes. The EP guys were not in position to see this tachycardia episode. They thought that well she would be an easy case to "restart" and see what was going on in her heart. They worked on trying to pace her heart for a LONG time and they couldnt induce the SVT. But since she did have the episodes in the cath lab they knew she for sure has SVT so they started her on a new medicine for it. No ablation was performed because they couldn't find the cause of the SVT.

Then the cath surgeon began his process. It took FOREVER. They would call and update every hour and tell us what was going on. It was taking a long time because Laila has heterotaxy and her anatomy is very challenging. When they finished they asked us to go talk to the surgeon. He told us that right now things do not look like she is a candidate for the Fontan. She has high pressures. There is also the Common AV valve that needs to be repaired. Its a very risky repair and possibly wouldn't even help bring down the pressures enough to perform surgery. He did mention that her lungs look good so a transplant may be the option. However he told us that he was painting a broad picture of the options, but that he really did not feel she was going to be a Fontan candidate. The surgeons and Drs will all get together for a conference on Monday and decide what are the options.

It is not the news we wanted to hear, but it is what IT is. We have learned through this entire process that God is in control. We are not! When we knew Laila was our daughter we always knew that there was a tiny chance she would be inoperable. BUT once we knew that she was our daughter nothing else mattered we HAD to bring her home!! Sometimes people tell us she is so lucky, but really the opposite is so true. We are the lucky ones who were chosen to be her parents. Other people viewed her file, her paperwork was in Holland for a time, and all the while GOD knew she was ours. He was preparing the way. Right now she is here and we are going to try to not dwell on anything negative.

After surgery she has been pretty out of it. She has been HUNGRY though! She takes and falls back asleep. We are staying the night here at the hospital so they can monitor her. She was under anesthesia for about 8 hours so I am glad they are keeping her.

I will post more when I find out.....