Year 6 – Week 40 – Day 2

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.

8 Seconds!

They went with their friend Blake. They all like construction!

Such a cute construction guy!

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.

What is a little mud?

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.

Water balloon time!

Trevor popped this with a stick from the yard.

The expressions. I love it.

They resorted to trying to break the balloons on their own faces.

Or not

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.

Year 6 – Week 37 – Day 2

I apologize for letting this go so long. I am getting worse over time! Here is a giant update.

First a couple of random pictures, like dinner at the Old Spaghetti Factory

Playing at the Robot store

May 23rd – Brendan goes for an eye exam/routine checkup. This is Brendan before dilation

Brendan after dilation. He wanted me to take these pictures so that he could see what the eye drops did.

Being silly while waiting forever for the doctor

He was really good for his checkup and let the doctor do an exam without wiggling and crying. The doctor is concerned that Brendan’s right eye may be getting a bit lazy. Brendan has an updated prescription and a follow up in August. If the new glasses don’t help his right eye, he may need to wear an eye patch for a while.

It has been super hot (115 and up) but the boys still play outside.

We play water games to stay cool

May 24th – the last day of swimming school for the year. I really hope that we get the chance to do this again after school starts. Brendan is so eager to do it once his stoma heals!

May 25th – last day of Pre-K!!

May 27th – We were invited to a HopeKids garden event at the Scottsdale Community Garden plots.

Each boy was given some okra to break open and find seeds.

Tiny little seeds

Then they could plant them anywhere they wanted to

After they were done digging and planting, we could pick and keep any vegetables we could find. We brought home a bag of fresh beans, eggplant, onions, and peppers. It was hot, but fun.

Brendan found a twin onion

May 28th – Happy birthday to me! Just Trevor and I had a little lunch outing to IKEA.

This is before he licked up all the gravy. It is his favorite meal.

May 29th – Happy 6th birthday to cousin Caleb!

May 31st – We checked out a new water feature at the Sealife Aquarium and then spent some time with a friend in LegoLand.

June 7th – Brendan had a checkup at the cardiologist. This is Brendan holding super still for his EKG.

He was interested in knowing more about the echocardiogram. He liked watching the screen.

The cardiologist was very excited to see the trach gone and is very positive about readiness for the next procedure.

Just some random pictures of the boys making magnet block forts for their Halo soldiers.

June 14th – We went swimming at the home of one of Trevor’s school friends.

Brendan is still not allowed to submerge his neck, but he still had a great time.

Trevor and Brolin jumping off the diving board

After swimming, they played dress-up. Brendan loved finding an Iron Man costume.

Iron Man on the drums

All three boys played the drums while Brolin’s dad played guitar. It was…. loud

I finally finished a knitting project that I have been working on here and there for nearly a year. He is a minecraft creeper and his name is “Bomby”. He is huge and heavy and makes a great body pillow.

June 15th – Happy Birthday to Gramma!!! The boys and I made her this silly video.

June 17th – Happy 3rd birthday to cousin Rhys!

June 20th – Happy birthday to Aunt Shannon!!

We got an awesome score on craigslist. 🙂 😀

We also met some friends at IKEA for lunch. Where are those boys?

IKEA carts are the best

June 24th – Our lego pre-order arrived! We waited a few weeks for this. We will slowly build it as a family. It is 1969 pieces!

A lot of pieces!

Brendan claims that he is a master builder and he can do it all himself!

Trevor is more of a free-builder and needs me to back out of his creative space

To date, we have the big bottom stage of the rocket done. More to come!

June 27th – Trevor passes a tip test and gets a red stripe on his belt

June 28th – Building GlaDOS from the video game Portal. It is a family favorite.

Puffer-Buddy can take down GlaDOS

July 2nd – the boys are at the playground because they went with Bill to test ride the new rocket bike.

Our old rocket bike was a Schwinn Trike with a wood seat that Bill built. We added a battery powered motor to help me haul all the weight. It is how I delivered them to and from school every day. Now that the boys have outgrown the wood seat in length and weight, Bill had to take action.

This time he is building the whole bike from scratch!

The new cargo box to hold boys and backpacks

Almost done

The boys helped paint the box and it is pretty much done now! More on that coming soon!

So I will finish up the post with the biggest news. We have a date for surgery. On July 19th, we will go in for pre-op chest xray and bloodwork. On July 20th, Brendan will have the last stage of his Fontan procedure. Hopefully it will be his last operation! We will expect a 4-6hr surgery with an inpatient recovery of 2-3 weeks. I will also post more soon with more information about his procedure and what they will be doing. Now he just has to stay healthy!

Year 6 – Week 30 – Day 7

Another month… Where does the time go? I have shared some of this on Facebook already.

April 26th – lunch at Trevor’s favorite restaurant – IKEA. We don’t go anywhere near enough for Trevor’s liking.

April 28th – We got a quick visit from the boys’ Uncle Kevin. After thoroughly wearing him out with a giant nerf war, we took him to Trevor’s second favorite restaurant – Old Spaghetti Factory. After dinner, Trevor still had tons of energy.

April 29th was Brendan’s favorite HopeKids event. The owl picnic! It is a nice little gathering at a park with bouncy houses and pizza and meeting new friends. But there are owls! This year, they brought a little burrowing owl in a fancy house. His name is “Digger”.

Brendan’s buddy from last year, the owl named “Robert”.

Brendan made a mask at the crafting table so that he could talk to Robert.

May 3rd – Random photo from one of our numerous Aquarium trips! We love Wednesdays, the place is empty!

May 5th – We had a visit with the heart surgeon. Brendan’s surgeon that did his other heart procedures has left the hospital so we met the new one. We were really thrown for a loop when he told us that he wanted to wait for the trach to come out first before he would do surgery. We thought we would be getting a surgery date in a matter of days. Now it seems we are caught in a loop. It left us reeling.

May 6th and 7th – Time to get some business done. We rented a little excavator for removing the rest of the big tree from the yard. I hate to see such a nice tree come down, but it was way too big for where it was planted and it was doing a lot of damage. (And bothering the neighbors!)

The roots on this tree were massive

Giant crater!

May 10th – Random photo of Brendan blow drying himself at the Aquarium

May 13th – Random photo of Brendan finding random pieces of clothing and dressing up “like a ninja”.

May 22nd
This was the appointment with Brendan’s ENT. We had a very difficult decision to make about the steps for Brendan. We don’t want to keep losing time but we also want to not put Brendan through any unnecessary risks. In the end, we let Brendan make the choice. He was very eager today to come home without a trach. He insisted. It happened.

“Who let the owls out?” is Brendan’s newest song that he sings all the time. He modded it for today’s special event.

Brendan has been sleeping with perfect breathing for almost 3hrs now. You had better believe I will be awake most of the night listening to him breathe. I am excited for him, so proud, and undeniably nervous. We hope that he took out his last trach tube ever. Brendan says, “Gone for good!!!!”