Meeting with Laila's surgeon... (I can never think of a catchy title )

I have been meaning to write this blog post all weekend and now I realize it is almost Wednesday. Where has the week gone? Seriously its like we are moving at break neck speed lately!!!

So on last Thursday we met with Laila's surgeon. We absolutely feel 100% certain that she is in the best hands she could be in. He took the time to explain to us how the surgery will go. She will be put on Cardiopulmonary Bypass and they are going to first repair the Common AV Valve defect. He feels that by fixing this valve it would lower her pressures and make her a borderline Fontan case. Even though her pressures will still be higher than they would like for them to be during surgery, he proposed that this was an option. Then after the valve is fixed they will proceed with the Fontan. He is going to do a Fenestrated Fontan which is when a small hole is left in the heart to help the pressure not become too high. This fenestration will somewhat keep her oxygen levels lower although he feels it will still be in the lower 90%. For Laila who is living at 75% (and has been for several years by the evidence of her clubbed fingertips) sats in the lower 90s will be a HUGE change. If they ever need to close this "hole" it can be done in the cath lab. So only one open heart surgery at this time is planned. Dr M. spoke to us about the risks Laila is facing in this surgery. She is somewhat higher risk because of her heterotaxy and just the sheer amount of things that will going on during surgery. But overall I am comfortable as I can be with the % he told would be worst case scenario. I was expecting it to be a much higher percentage, so that is good. There is a 100% chance if she does not have this surgery something could go very wrong for her, so right now this is the BEST option. This is her shot at a long life. Later down the road she will most likely need a transplant, but for now we are able to "buy" this precious time while technology advances.

As far as timing for the surgery we have to wait at least one week until her teeth are fixed. I forgot to post that YES she does need 2 teeth capped. That will take place on November 12. She will have to be put under anesthesia and it will be done at Texas Children's. I feel most comfortable for her to have the procedure done there. She is excited to have caps on her teeth :) She really wants braces like her cousin Brae! :) So about the timing... Dr M said we are not in a huge rush and we could wait until after the Holidays for surgery. I have grappled with this decision because I am a rip-the-band-aid-off-ASAP person!!! I dread knowing that something huge is just around the corner and I just want to hurry up and get it OVER! Now Jarrod is the voice of reason that is saying we should let Laila enjoy her FIRST Christmas and then have the surgery since we were told it is OK to wait. Its so close anyway since the soonest they could operate would be Nov 19 and we found out they are booked up then and the next week. We should know in a few days the actual date.

As far as Laila is concerned she is THRILLED to be having heart surgery. After her cath and the news we got that day I never could bring it up with her that they didn't think she was going to have her surgery. So finding out she is getting the surgery everyone prayed for is truly blessing her. She wants to do everything that she cannot do now and she is pumped!!!

Overall the past 22 days have been a ROLLERCOASTER. I cannot tell you how hard it was to be at lowest point when we thought that there were not any options for Laila. Mostly it hurt because we knew how bad she wants to feel good. We were willing to pick up and move closer to Houston if she needed to go on the transplant list. We still would if the need arises. We trust that God will put us exactly where he wants us. Right now we feel optimistic and we are in a good place.