We have our surgery date!

Finally - after all the emails and phone calls we got our date - August 19. I'm not sure if it was relief or fear but I sat down and cried. I have been pushing so hard for this surgery, now that we have a date I don't want to do it. I don't want that life for Macsen. I don't want my sweet little boy who doles out hugs to complete strangers, waves hello to everyone like he's the grand marshall in his own parade and trusts Mom and Dad to protect him from all things dark and scary - I don't want him to change, to be afraid, to go through all the pain he will have to endure. And I am terrified he won't be ok, that he'll have some of the awful, random complications we have seen happen so many times in the heartland to our babies when they are put through surgery. On the other hand if he does ok with the surgery, is able to fight of fall the issues that can happen during and immediately after surgery - he can be in a much better place then he is now. He can grow better, he can eat better, his oxygen levels will probably be better. and we won't have another surgery looming forever on our horizon - we will be post fontan - a place where I see many heart kids just thrive.
We are looking at flights, planning logistics of care of our girls, planning an early birthday party for our oldest because we won't be here to celebrate with her. I am making a rewards box for Macsen full of small toys to help ease some of the harder moments. And we are getting ready for back to school which starts in 2 weeks here in Alabama.Busy time. We appreciate all your prayers and messages.

Camping and cardiology appointment

Macsen had a cardiology appointment in Pensacola so we made a mini vacation out of it. We all had a wonderful time at Gulf State Park in Gulf Shores - they have a beautiful pool, hiking and biking trails, a gorgeous beach and a nature center where the kids got to hold a snake and pet a tortoise. I think we have found a new camping home for Macsen's appointments.
His cardiology appointment went well. He literally swaggered in and hopped on the scale first thing with no prompting. Then he backed up to the wall mounted ruler so they could record his height without anyone asking him. Then he proceeded to look for the  room where he would have his echo and would have climbed on the bed himself if his little legs would have reached. He even put on a latex glove and started doing his own echo. This kid is a rock star. All the staff loved his "Fontan 2015" shirt that says "don't worry. I've got this." his function looks unchanged but unfortunately his oxygen levels were significantly lower - measuring only in the 70's this time. He was completely at rest so that means when he is running around it's probably in the 60's.

Resting with Mr.Gopher Turtle

Aaron kept getting fairy cards 

Macsen ate some hot dog pieces for his sister

Aaron did M's hair

I can do my own echo thank you

Macsen is a go

 Macsen's team thinks he should go ahead and get the fontan, the 3rd surgery to reroute his deoxygenated blood from the lower part of his body to passively make its way to his lungs, taking some of the load off his heart. They will just " watch him more closely" for fluid issues bc of his extra lymph he perpetually carries around. They don't really understand the lymph issues he has and are just now making a connection with too much lymph and serious complications from the 3rd surgery. So I am nervous about this surgery - i am glad they feel he is well enough to do it but worried our lack of knowledge is very great. The extra complications are plastic bronchitis - lymph draining into lungs solidifies and creates casts that can choke the child if they can't clear it. Or protein losing entropy which is when lymph drains into the intestines blocking the absorption of protein, damaging the liver and is at this time incurable and fatal. I look at my sweet boy - playing with his trains right now, looking for his sisters to play with him, and I endlessly worry this surgery will be the one he can't overcome. He's done so well so far but that is by no means a guarantee he will do well with this one. Today one of our little heart buddies is going home, finally, almost 10 months post fontan. His family has been through hell - watching their walking, talking little boy suffer a brain injury after this surgery and fight like a warrior to lift his head, stand, and try to regain some of the skills he had before this surgery. We don't have a date yet - I anticipate it will be in the fall before we can get a date with the surgeon we want. 

We have sent all Macsen's info to Boston Children's for a second opinion.