So good to be home

Yesterday we spent half the day waiting for them to get Jack scheduled for an echo. Of course the minute I ran downstairs to get a sandwich (without my phone) they decided they could work him in so they paged me over the hospital intercom. I totally panicked trying to find a hospital phone, but was very relieved that it was for a good thing.  Jack was freaked out about the echo but did ok, then they left us waiting for 45 minutes to make sure they had the images they needed. Jack was starving, scared and due for meds so I finally snapped, told the nurses we were leaving and went back to his room.  

A little while later Dr. Kaza came up and said the echo looked good.  That was the news we needed to get our ticket out of there.  We let Jack rest until we were all ready.  

Jack got one final wagon ride out to the car.

Finally this morning his smile was back. He woke up and requested a show and some milk. We went outside for a bit, and he finally started playing with all the fun gifts he has received from people who love him. He's now taking a nice nap while I chase Tyler around the house. Ty is so happy to see his brother and loves the new toy he brought (the oxygen cord).  It makes it so he can always find his favorite person.

It is SO good to be home.

Day 5 - Home?

Jack is grumpy today, but I think we are super close to going home.  We've been waiting all morning and finally got him in for an echo a little while ago. Now we are waiting for them to read it and make sure everything looks ok before we get the official go ahead, but I think we will.  His xrays are clear, his IVs are all out, Dr. Kaza just stopped by and said he looks wonderful. We just need Bonnie, the NP, to buy off on our exit so we can start filling perscriptions and get the o2 ordered.

Oh, I can't wait to sleep in my own bed with my whole little family under the same roof again. I know it hasn't been that long considering, but as soon as they mention the "H" word the days suddenly seem to drag. Everybody cross your fingers and say a little prayer so we can bust out of here.

Day 4 - Chest Tubes Out

Jack got his chest tubes out this morning. He still doesn't feel very good, but I'm positive he is more comfortable with those gone. And it makes it SO much easier to load him into a wagon, which is good because he insists on coming with me whenever I leave the room, whether it's to meet the neighbors or go get a drink. I don't blame him for being wary of everyone though. He's been through a lot these past few days. I'm surprised he still likes me considering I'm the one pinning his arms down as they yank what seems like yards of tubing out of his stomach.

I'm hoping he'll take a nap and wake up feeling a little happier. He was so happy last night and finally playing and using some of the bags of entertainment I brought, but today he's pretty depressed and listless. Tyler is coming to visit later today so hopefully that will cheer him up too.

Healthwise - he is really good.His heart is strong and all his meds have been switched to oral which is a good step toward going home.  Bonnie said that might be a possibility tomorrow, but I never believe it until I see it.  He still hasn't pooped and isn't really eating much more than watermelon and milk, so we'll see. One day at a time.

Progress

We've had a good night. Jack had several meds kick in and a visit from baby brother Tyler all at the same time, and boy did he turn the corner. 

He smiled when he saw Tyler.

He discovered the fun buttons on the bed and invited daddy in for a ride.

 He was able to stand up for a few minutes.

He even got a nice long wagon ride.  He wanted to check out the playroom but they closed early tonight so we've scheduled a playdate with Connor (who had his Fontan on Tuesday and is down the hall) for tomorrow morning.

It was so good to see that smile again.

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.