Thursday, April 19, 2012

Cath Results

Today Jack had a heart catheterization at PCMC.  We had to leave by 5:15am to be there on time and amazingly Jack was all smiles. He played with the toys, made some friends, was really excited to get his very own wrist band (see below), kept asking if it was his turn for a check up, and was thrilled when he got to go on a wagon ride. He sang ABC's with me as he drifted off to sleep in the cath lab. It makes it so much easier to put him through tough things when he has such a good attitude.

Jack and his very own wristband

Checking daddy's eyes while waiting.

Watching shows in recovery
For the cath they thread a wire through his neck and through the artery in his leg to check his pressures and get images in preparation for his surgery.  That means afterward he had to lay flat and keep his leg still for 4 hours to prevent major bleeding. I thought it would be tricky, but he was so tired he just watched tv and was pretty content.

The results of the cath showed that the pressures in his lungs are a little high, but still within range that he qualifies for the next surgery, so that is good.  He had a few collateral veins and arteries that had grown as the body tries to compensate for his quirky blood flow, but Dr. Day choose to only coil off 1 of them as the others don't seem to be creating problems. The only bad news we got is that there seems to be some narrowing along his aorta. It's not a huge problem in a normal heart, but while Drs Day and Puchalski decided not to balloon it, they said that Dr. Kaza may decide when he gets back in town that it needs to be ballooned before surgery which would mean another trip to the cath lab next week. I really, really, really hope that is not the case and that he decides he can fix it during surgery. As much fun as we had today, I'll pass on a repeat anytime soon

Two more weeks until Fontan.

Sunday, April 8, 2012

Countdown to Fontan

For those who may not yet know, Jack is scheduled to have his next heart surgery, the Fontan, on May 3rd.  That is just 3.5 short weeks away. Yikes!  We’ve had several opportunities to talk with Jack about how he will be going to the hospital soon so the doctors can fix his heart, but mommy and daddy will be there with him.   I mentioned that he will have to get some pokes and “owies”, but he will get some presents and treats while he is there and he looked at me and said, “My tummy hurts. Let’s go to the hospital.”  We’ll see if he’s still so enthusiastic in a few weeks. 

This week we will be heading up to the hospital for a pre-surgery class. He will get to see the OR and learn more about what is going to happen.  Hopefully that will go well. Then next week he is scheduled for a heart cath to get some pictures of his heart and check to make sure the pressures are where they need to be so he can have this surgery.   

We feel very blessed that Jack is doing so well going heading this surgery, but it is days like today when he needed a break half way through his Easter egg hunt that I am reminded that he is not like other kids and that he is ready.


Giant Easter Bunnys

Jack's cute cousin Ally came to visit a week or two ago over Spring Break.  She and Jack are best buddies.  While she and her mom were visiting the new City Creek Center they stopped in Rocky Mountain Chocolate Factory and saw a giant 3 ft tall, 25 lb chocolate bunny they were giving away.

Ally entered to win and put that she wanted to win it for her cousin Jack who was about to have open heart surgery.  Guess who won!   Rather than drag the poor giant bunny around for a few weeks, they decided to take the bunny up to Primary Children's Medical Center on Friday in Jack's name so they could have it for Easter.  They gave a couple of smaller bunnies for Jack and Ally to eat at home.

Here is Jack enjoying his. I'm pretty sure he would have eaten the whole thing tonight if I would have let him. He kept saying "Mom, I'm starving! I need to eat my chocolate bunny."   Thanks Ally and thank you Rocky Mountain Chocolate Factory!