Day 2 - Finally resting

Physically Jack is doing really well. He is very stable and everyone is pleased with his progress. Mentally, it's been rough. All day yesterday he was very out of it, agitated, and restless. He couldn't keep his eyes open or get to sleep, he wanted to go home, and told Dr. Kaza that he needed lots of band aids. We were finally able to give him a little watered down milk around 4:30 and about an ounce or so every half hour after that, which helped but he was so thirsty he just kept asking. Dr. Kaza came by around 6:00 and said that it is pretty typical for post-Fontan patients to be extremely thirsty.

Marc and I were exhausted so we left to sleep last night, but the night nurse said he was still fairly delirious until around 2AM when he was finally able to sleep a bit. He also got to eat some chocolate pudding and they said he liked that.  Our new nurse this morning (Carolyn) switched his pain meds to something that seems to be working better and cut the prongs off his oxygen which was bugging him and he is now sleeping peacefully.  They plan to pull the jugular line when he wakes up and the arterial line tomorrow so we are making good progress.

He wants some milk

Oh, sweet Jack. He feels yucky and out of it, and he keeps crying out and trying to negotiate for milk, "But it will make me feel better."  I knew the no milk was going to be the hardest part for this boy. One more hour bud. Hang in there. He has declared that he is all done and wants to go home, but really he is doing well.  His o2 sats are in the 90's which is great, and his blood pressure is good.   He's not even really on any medications other than for pain. The anesthesiologist just came by and said he gave him an A+ for how he did during surgery.  He just really, really wants some milk.

Update - Dr. Kaza

We just met with Dr. Kaza and he said everything went as planned which is as good as it gets.  He's extabated and in the CICU now. We can go back to see him in about 45 minutes.

Update 3 - almost done

Jack is off bypass and they are getting ready to close him up. No issues or complications so far. Next update will come from Dr. Kaza.

Update 2

Jack is just about to go on bypass. He had a moderate amount of scar tissue, but not bad. He is doing well, and so are we. All the grandparents just arrived so they are keeping Marc and I sane.  More later

Update 1

Jack went back for his surgery this morning at 7:30. He refused to put on the hospital pajamas, but was otherwise in good spirits.  Dr. Kaza said Jack looks fantastic and felt very good about this being the right time to do this. He is such a brilliant surgeon. He hasn't seen us in 3 years and he remembered that Jack was his first Norwood at PCMC and that Marc goes by Hardy and is a Red Sox fan. We feel very confidant that Jack is in good hands. We got our first update a few minutes ago and they said all was well and Jack is asleep. The next call should be in another hour or so.

Thanks for all your thoughts and prayers. We are so grateful.

Ready or Not...

Jack is all set to go first thing tomorrow morning. He is first on the docket so surgery will begin around 7:30 a.m.  We'll keep the blog updated throughout the day.

For those interested in learning more about Jack's condition and the surgery he is having, watch this 10 minute video. It is by far the best explanation I've seen.  It also features Dr. Peter Gruber who is now the Chief Cardiothorasic Surgeon at PCMC.

Thanks for all your prayers.  They are felt and appreciated.

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.

Countdown to Fontan

For those who may not yet know, Jack is scheduled to have his next heart surgery, the Fontan, on May 3^rd.  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!



Happy Valentine's Day

Fun with pom-poms

I bought a bag of pom-poms at Target for $1, so yesterday we pulled them out for some fun.  Jack sorted them by color, and we played a game where we tried to drop them from way up high into the jar. (Hurray for Pinterest and people with fun ideas to share.)

Tyler thought they were great and laughed and giggled, only occasionally putting them in his mouth for a little chew if I could keep Jack from stealing all of them.

 He's so cute.

I finally lured Jack away from stealing his brother's pom-poms by letting him make cheerio towers on a piece of spaghetti stuck in some playdoh. So fun. (Yay Pinterest. Thank you for helping me entertain my children.)