Surgery Plans

So I thought I would share the plans we have so far for Aili's surgery.

We decided that having Dr. Hanley do the surgery was our best options. Everything from the beginning pointed to him and we felt like that was what we needed to do. So we will be going to the Lucile Packard Children's Hospital at Standford in California.

Reason's we chose Dr. Hanley:

• The first cardiologist we ever talked to at Primary Children's mentioned him.
• Friends sent us links about him to us, and we read a lot about him.
• We read other parents experiences with him, and they said you have to go to him, he works miracles.
• He pretty much invented the exact surgery that Aili needs.
• A cardiologist told us "off the record" if it was his/her child he/she would take her to Dr. Hanley. This confirmed to us that he really is the best.
• After Dr. Hanley looked over all of Aili's information that Primary Children's sent to him they sent us a letter back that said, "Aili presents a situation that is very favorable for one stage unifocalization and intracardiac repair."
• Dr. Hanley specializes in repairing the heart in one surgery instead of multiple surgeries.
• Our insurance prefers that we go to Dr. Hanley. Which again tells us that he really is the best! They will pay for our flights and give us $100 a night towards a hotel.

On Thursday, May 10th we will be flying out to California. I'm really really nervous about this. I mean getting myself to the airport and onto the plane on time stresses me out period. Now I have to worry about getting a baby with oxygen on that plane too. And we can't just take a tank of oxygen with us either. We have to have a traveling pediatric concentrator for the plane. We have a pediatric concentrator at home, but it is much to big to travel with. (By the way that pediatric concentrator has doubled our electric bill!) Then we have to make arrangements to have oxygen for her while we are in the hotel until she is admitted for surgery. Luckily our cardiologist's nurse his helping us arrange all of that! Super nice! Oh and I'm also really nervous that Aili will catch a sickness while around all the nasty people in the airport and airplane. She has been in lock-down, and we have not taken her to any public place except for the doctors offices. So we pray she doesn't catch anything!

We are not sure where we are staying yet. We put ourselves on the list to stay at the Ronald McDonald house. It would be really nice to stay there. I mean what the do is take care of families who have children in the hospital. They only ask for $10 a night. It's all run on donations and volunteers. Breakfast pastries are donated daily from Starbucks. Meals for Munchkins, the House's supper program, recruits local businesses and restaurants to prepare a hot dinner for families several times per week. There is also free laundry facilities. So ideally we would love to stay at the Ronald McDonald house. It will help us keep the cost of staying out there down, it will all add us quickly. We don't know until 2 days before we go if they have room for us though. So we are looking at a hotel as back-up if this doesn't go through.

On Friday, May 11th she has "pre-cardiac catheterization". I don't really know exactly what that all will be. Probably just going over all of her information, and general health. Maybe getting an echo done.

On Monday, May 14th she will get a cardiac catheteriation at 8:30 am. She has had one of these before. This will help them map exactly what needs to be done for the surgery. I'm not sure if she will be discharged after this, or if they will just keep her until the surgery.

On Wednesday, May 16th she has surgery. I'm not sure what time this will be, but I'm pretty sure it will be early in the morning. We were told it will be about a 14 hour surgery. Yeah.....freaking long. I mean considering what needs to be done on her tiny little heart it makes sense, but still, that is SO long!

If anyone has had any experience with a loved one going in for a long surgery, please let me know what you did during the surgery. I think I may go crazy waiting for 14 hours while my sweet baby girl is getting OPEN HEART SURGERY! What do you do for that long? You don't want to leave...but how do you just sit there and wait in the hospital for 14 hours!?!? I think I may cry for 14 hours straight.

If everything goes perfectly with the surgery (which it will! positive thinking!) the recovery in the hospital will be 2 weeks that puts us coming home around May 30th. But if there are any complications, infection or what not, it will be longer. So we will be in California for at least 3 weeks.

This is very overwhelming and scary, but exciting to finally be getting it done. I just want my baby to be good and healthy, that's it! It will be a very hard 3+ weeks. I just am praying that everything goes as smoothly as possible.

We would really appreciate your prayers during the time of her surgery; for Aili, Dr. Hanley, and Chris and I.