Summer Fun - July

July brought fun at the Splash pad,

Making cookies with friends,

Swimming and looking tough with his cousins (Jack and Ty on the far right)

 Fighting fires at Draper Days,

Checking things out at Kennecott Copper Mine,

Mowing the lawn in the rain,

And an awesome trip to Cowabunga Bay.

Throw in some swim lessons, lots of time at the park and in the back yard and we have had one great summer.  So glad to have the Fontan behind us, lots of summer fun, and the beginning of preschool in a couple of weeks.  We are SO blessed.

Summer Fun - June

I can't believe this summer is almost over. After being cooped up all spring, we have been living it up.  

Jack is back to 110%. He has more energy than ever before, which has made for a fun summer full of great activities. Little brother Tyler is now walking/running, hardly needs a nap, pretty much thinks he's 4 years old, and is a bit mischievous so we have been on the go non-stop.

We've been to Hogel Zoo several times which is always lots of fun.    

We went to the South Jordan Country Fest

 Had a family reunion in Park City

Where we rode the Heber Creeper...

 and the Alpine Slide.

 Watched several parades,

And went to Lagoon a couple of times.  Jack's favorite rides are Bombora, Tidal Wave and Rattlesnake Rapids. We were in line to go on the water slide ride and he said he wanted to go on the black slide which means you ride down in total darkness. I told him it might be kind of scary.  He put his hands on his hips and told me, "Mommy, I am very brave."  Yes, my boy. You are the bravest boy I know. We went down the black one, an he loved it.  I can't wait to take him to Disneyland this fall. We're totally taking him on Splash Mountain and everything else he's tall enough to go on. He's going to love it. As you can see below, Ty might like it too.

"Lookin' good!"

Jack just continues to feel better and better each day. In fact, he's driving me crazy today just the way a 3 year old should.  Last night he played with his cousins and chased them all around the Grandma and Grandpa's house, keeping up the whole time which I'm not sure he could have done a month ago, so that was awesome.  He was sitting at a table with just the cousins and as I came over to bring his food I overheard him telling the kids about his surgery. He said he was at the hospital and had some surgery, but he's feeling better now. He even was showing them his scar and said that pretty soon it would be all better and he would look like his cousin Josh.  It was good to see him open and comfortable talking about it.  That night when I put on his pj's he looked at his chest and said "Lookin' good!"  And it really is.

We've been playing outside a lot lately. Last week I pulled out a sled (since it might as well get some use this year) and filled it with water.  The boys had a blast, pouring and stirring and throwing things in. 

And look who is standing all by himself now! Just in time for his birthday this Saturday.  Ty is quite pleased with himself and loves to push anything and everything around the house and yard.  He is so darn cute, and it's a good thing because he is so busy. Heaven help me when he learns to walk which will be any day now.

Post-Op Check Up

Jack had his post-op check up this morning.  When I told him we were going to the hospital he got upset, told me he didn't want any pokes and tried to talk me into going to the hospital with the fish tank that changes colors (Riverton) instead.  I reassured him that we would come back home in a few hours and we were not having a sleepover this time.

The good news: His xray looked nice and clear and his incision is healing nicely. He finally got to enjoy a nice bath tonight rather than the shallow splash that I've been letting him have trying to keep his chest dry.

The less good news: His sats on o2 were 92, but when we took him off he was hovering around 84. That may not seem like a big difference, but with the way his anatomy is working now, sats below 90 mean there is too much pressure in his lungs and therefore too much blue blood is passing through the fenestration (hole) back into his heart.   The result is that he is still on oxygen. They said he can be off when we go out or if we are playing outside, so that will make it easier, but when we're home and at night he needs to have it on.  As soon as he can stay around 90 on room air we can discontinue the o2, so I think we'll be checking his sats a lot more often.

He was able to discontinue 1 of his medications which is good, but we had to do a blood draw to check to make sure it was ok.  I'm usually a good tough momma when it comes to holding him down for chest tube removal and iv placement, but today this little blood draw made me pretty sad.  He was so upset and terrified. It took me and 3 lab techs to hold him down. Among HLHS kids he has been a rock star and sailed through all his surgeries, but for a 3 year old kid, he's been through a lot. He's had more pokes, pains and medications than I've had in all my 33 years. We got done and he got to pick out a doughnut from the Rainbow Cafe, then fell asleep on the way home.

He's taking his medicine so much better now, and after a really rough day on Sunday, he is now doing better and better each day, both physically and emotionally. I hardly gave him any pain meds today. Overall, we're getting there. I just have to remind myself that it hasn't even been 2 weeks since his surgery and really it will just take time to fully heal.

Getting back to normal

This one's for you Mindi :) A few extra details for all my Heart Mom friends preparing their kids for the Fontan in a few weeks.

Things are slowly getting back to normal.  Each morning Jack wakes up and he's in a fair amount of pain so we go straight for the pain meds. I've been trying to wean him down to just Tylenol, but he seems to still also need a dose of oxycodon in the morning or he continues to complain that he is hurting. Once they kick in he's usually ok the rest of the day as long as we stay on top of it.  

With all the beautiful weather I've been trying to get us outside to play rather than just lay around and watch Bubble Guppies which for some reason is his favorite show ever since we got home from the hospital, but I'm finding it to be a bit tricky to balance between getting him out to play and him overdoing it.  Today we had some friends over and while my back was turned Jack decided to follow the kids and climb up the slide (he's not supposed to play on playgrounds for a few more weeks). He got almost to the top and realized that what he was doing really hurt so I carefully got him down, but ever since he has been complaining any time he laughs or coughs that his chest really hurts (like shaking, crying really hurts). It is also so hard to keep up with him outside.  He is on oxygen so if he goes sprinting outside I have to hurry and switch him to a portable tank and then follow him around the yard, usually with fat Tyler on my other hip which is exhausting.  I brought out the big tank on a cart today and let him push it around himself and he thought that was pretty cool, but he kept getting tangled up and I'd have to go rescue him.   I will be so happy if/when we are done with the oxygen, hopefully next week after his post-surgical check up. 

For a few days after we got home Jack was still very grumpy and distrustful of everyone.  He would smile and play with mom or dad, but his friends who stopped by to welcome him home were greeted with a scowl and he wouldn't talk.  I was worried that he was embarrassed by the oxygen, but it must have just been because he didn't feel well because now that he's feeling better he's not embarrassed at all. His cousins came over yesterday and some friends today and he really enjoyed it.

Our biggest struggle these days is taking his meds. He doesn't mind the Tylenol, and the oxycodon hides well in chocolate pudding so I can keep him from hurting. Even the Enalapril and Aldactone he dislikes but I can get him to take. But the lasix...ughh. You would think he was being water boarded the way he writhes in pain at the very idea. I took it to the pharmacy and had them change the flavor. Still torture. I've tried reasoning and explaining the importance to him. I offer him treats and rewards if he will take it willingly. I make threats if he won't.  Nope. I usually end up frustrated and finally just prying his mouth open, shoving it in and squeezing his cheeks until he swallows it so he can't spit too much of it back out.  He did better today, but oh, it is a battle. And Lasix is one he will most likely be on for a while. Poor kid.

I think the hardest part of all of this for me right now is probably Tyler. He is at such a busy age that trying to keep up with him as well as care for Jack is hard.  He missed me while we were at the hospital so now he wants to be on top of me all day long.  But lugging him around, plus Jack, plus Jack's oxygen tank is heavy. And having him climb up me as I'm shoving lasix down Jack's throat is hard. And trying to keep him from cracking open his head while I'm untangling Jack is impossible. And seriously, he is so cute, but look at this face.  It just screams trouble. Yes that is chalk all over his face. Yes, he was eating it. Again.  I look forward to Jack feeling better so I can go back to enjoying Tyler again and not just feel like they are sucking everything out of me by their mutual desperate need for me 24 hours a day.  

Eating chalk

Playing with the oxygen cord

He's Fine

We had a little scare this morning, but everything is fine.  Jack started complaining that his side really hurt and it was hard to breathe. It made me nervous since a frequent complication of this surgery he had is pleural effusions which is a build up of fluid around the lungs.  I called the Nurse Practitioner at Primary's and she recommended that I take him to the Riverton Hospital for a chest xray.  I took Ty to a neighbor (thanks Heidi and Brandon!) and Jack and I went to the hospital. Jack was very brave, and afterward requested that we go get a cheeseburger at Wendy's, a very good sign that there was nothing wrong. He ate a good lunch and a little while later cardiology called and said everything looked fine.   Whew!

He has been happy and running around like the silly little boy that he is ever since. He is currently squirting his car (and my house, and occasionally his brother) with the hose in the back yard.  From time to time he needs to sit down and take a break, but that's a-ok. He's still mastering the skill of getting around the house with his oxygen cord without getting tangled, but he's being surprisingly good to keep it on.

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.

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