I am posting this on the evening of the 26th, hoping that Brendan’s Fontan procedure will be taking place tomorrow morning. It was originally scheduled for the 20th, but then postponed at the last minute. Today we went in for pre-op testing. Brendan had an EKG, a chest x-ray, and they drew four vials of blood. Brendan has a very loud piercing scream. He wanted no part of bloodwork, but he recovered quickly. He was quite brave about it until the very last minute.
When surgery was rescheduled, they set it for 1:00PM tomorrow. Today, we were told that another emergency case has bumped everything around and that Brendan was moved up to 8:00AM. Then this evening, I get a phone call from the surgical assistant. He says that the surgeon was flying home today and his flight had a major delay. They bumped Brendan back to 11:00AM. Now I am feeling a bit panicky that they will call in the wee hours and tell me the surgeon did not make it back to AZ.
I am having trouble handling the uncertainty.
So I will catch up on all the cute, happy pictures since the last update.
We spend enough time at LegoLand that Google Maps thinks I work there. It pops up in the morning and tells me how long it thinks traffic will make my commute to “work”.
They spend up to 6hrs each visit, mostly lost in this enormous play structure.
Monsoon season has arrived and we have had some interesting weather. Trevor wanted me to take a picture of these clouds because he thought it looked like a volcano.
I got a new chair in the mail. That means giant cardboard box.
The chair is awesome. (It swivels) That is how I like to sit in it too! 😀
The boys LOVE giant cardboard boxes. I love the giggles. They are quite silly.
We hadn’t been to the IDEA museum in ages, but Trevor asked to go.
They went with their friend Blake. They all like construction!
Speaking of construction, I found this old Fastech erector set in the attic. They were captivated. I remember using up every rivet in the box trying to put everything together when I was a kid.
Trevor loves to dance. I love his dancing. He is too shy to show anyone his moves, but does not mind me taking video.
I won’t lie. I do a lot more creative projects when I have stressful deadlines approaching. I am very motivated to do something artsy when it means that I can procrastinate doing something that causes me anxiety. I have worked so many hours trying to organize and prepare for surgery day, and you can’t even tell by looking around the house. So I blew off the rest. And painted t-shirts. Brendan requested “Mutant Blob from Space”
Trevor asked for a puffer fish.
Yesterday, we did a lunch at IKEA. The boys loved this mirror with a bright light-up frame. It made a ring light in their eyes and they were fascinated. And cute.
Brendan’s stoma is MOSTLY closed. There maybe just a teensy pinhole of an air leak still. He is really enjoying being able to play in water more easily. Trevor started with the mud pies.
I was trying to get Trevor to show me the huge mud blob on his back, but look over his shoulder. Ah, well. Still cute.
Their friend Blake and his mom came over for dinner and “water pillow madness”. I make water pillows when I am procrastinating. I rationalize that time is better spent with the boys than bothering with housework.
The water pillow sprung a leak. Trevor was the plug.
It lasted, even with a big hole on top. And now it splashed.
Trevor popped this with a stick from the yard.
They resorted to trying to break the balloons on their own faces.
Just floating. He has never really laid back in water before.
I will mostly rely on this blog for updating people with progress through surgery. I will also post some updates on Facebook. We are expecting 2-3 weeks inpatient recovery time.
We have waited 6yrs for this. We knew the Fontan procedure was in our future when I was only 22 weeks pregnant. We had no idea what an amazing boy Brendan would be then. This will be very hard for him to understand why he will have so much pain and limitation. I am hoping with every fiber of my being that it goes smoothly.