Recovery Floor

We made it to the recovery floor!  Jack is still not too happy about everything that is going on, but he is much more at peace now that we have made it out of the noisy PICU. Last night at shift change all the nurses were talking and loud and in his weak little voice he called out, "Hey guys. You're making too much noise. I'm trying to watch my show. You need to stop talking." Good to know he's still in charge.  We are now in room 3075, so if you would like to come visit you can give us a call.

Both his IVs have gone bad so he had to get a new one that required multiple pokes, and they've pulled out lots of stitched in lines and wires today so he's leary of anyone touching him, but overall he is good. He slept all day yesterday, but has been awake most of today. He tried to stand earlier but was in too much pain so I think we'll try again later tonight.  We still have a ways to go, but we're making progress.

Getting his pacer wires out

Enjoying a little nap

Yay! Our own quiet room on the 3rd floor

Day 3

Jack slept pretty good last night. He threw up once, and his poor tummy is so full because he hasn't yet pooped that he doesn't want to eat or drink and he is fairly uncomfortable. He's not too happy this morning. They are getting ready to take out his RA line and pacer wires, but he is pretty upset about it so they've ordered some versed. It looks like we'll be headed to the recovery floor later today so that will be good.

Nice and Quiet

Not much to report. Jack's been sleeping a lot today. He's awake now and watching a movie. They pulled out the line in his jugular vein so that feels better, and his fluid out put is going down. Grandmas and Grandpa have come to visit. Hopefully we'll get to go to the floor tomorrow.

Go Cougars????

So as we were relaxing with Jack we got a surprise visit from Bronco.  In the interest of full disclosure I told him we were huge Utah fans.  What a great guy.  He spent 10 minutes talking to us and asking about Jack's condition.  While I will still cheer for Utah I can now save myself five hours every Saturday cheering against BYU.  I am no longer a hater!  I am sure Jack will get a good laugh out of this one day as I am sure many of you are right now.  - Hardy

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.