Fontan

 

I got a call from UCSF this week, looking to schedule Joshua's Fontan. They wanted to schedule him for Feb.9. But that is just way too soon. We went ahead and scheduled him for early March. Reality is setting in. But at the same time I feel a sense of peace. This is the right time, Josh is healthy and strong. I know he'll do well.  I need to remember, in the past he went into surgery very unhealthy, therefore he struggled with recoveries.  This time will be different because he's done amazing since recovering from the Glenn.
We have 6 weeks until surgery. I know it'll fly by so quickly.  It's funny to think that we spent 6 weeks in the hospital for his Norwood and then again for his Glenn. Talk about a l-o-n-g 6 weeks!
Well these next 6 weeks we intend to do a couple of things; have fun and stay healthy!
We really appreciate all of the words of encouragement, thoughts & prayers that have been said on our behalf.  It really lifts us to feel all of the support!

In his element

Joshua recently started gymnastics & I have to say, it's perfect for the little guy!

Josh is constantly hanging, swinging, flipping, running & jumping at home, so gymnastics is heavenly for him! 

It's a place where he can live out his acrobatic dreams!

 

And his teacher is a perfect match for him...I'll take some video in the coming weeks, it's so fun to watch my little monkey!

...

As far as his heart goes, we met with Dr. Rivera yesterday for a post-cath check up. We decided to have surgery scheduled within the next couple months.  Dr. Rivera let us know how encouraged he is with the findings of the cath. Hopefully the Fontan will go well, based off the fact that he'll go into surgery healthy & strong.  I'll update with more details later.

Success!

Never in a million years would I have expected yesterday to turn out as it did. From start to finish, Joshua's cath couldn't have gone any smoother.  Based on our previous experience, I mentally prepared for a bit of a bumpy trip. Josh had very tough recoveries after his first two surgeries, so naturally I have anxiety when it comes to these things. I was mostly nervous about how he would fair emotionally. 

Joshua has a really good relationship with Dr. Rivera, his cardiologist, and has no problem going to doctor appointments. However, I was afraid that the hospital atmosphere might scare him & I was nervous about how he'd react.
Well, he was just normal Josh! Talkative & social. He wasn't thrilled to trade in his Batman t-shirt for the hospital gown, covered in clowns...but who would be? But other than that, he was in a great mood all day.
Since we were the second case of the day I worried he would have to sit around for countless hours, bored & hungry. That was not the case. The minute we walked into the unit he was surrounded by nurses who couldn't believe how big he had gotten, nor how confident he was. Then he was whisked to his bed and the next thing we knew his vitals had all been taken & he was wearing the clown hospital gown...it happened that fast...no time to think about being hungry!
It was only about 30 minutes before we were up at the lab waiting to go in for the cath.  In that 30 minutes he met Beatrix, the child life specialist, who was amazing. She kept him in good spirits, and distracted. He was also given a dose of some anti-anxiety meds while he waited to be taken. When the meds kicked in his eyes got wide & he began slowly swaying. He was a happy boy. He was "balloon guy" as he called himself!

When it came time to go into the lab, I was holding him & he whispered to me, "Mom, I'm scared."  It made me feel bad for him, but he was still very calm, just laying in my arms...the medicine must have had something to do with the calmness.

Then it was time for his IV's to be placed. He wasn't happy about it. But he did a good job anyhow. He cried, but didn't fight it, thank goodness.

After the IV was placed they began to medicate him more heavily, to get him to sleep etc. This was the toughest part of the day.  He tried fighting the meds & was crying and thrashing around as he fell asleep. But it was only a few minutes & then he was out. We kissed him & said goodbye.

We were told the procedure would last between 2-4 hours, and they would give us a 40 minute heads-up, by paging us, before we needed to go back to his room.

Jon and I were scheduled to give blood (for a genetics study on HLHS) soon after saying goodbye to Joshua.  So we gave blood and then grabbed a quick bite to eat.  After eating we were discussing what we should do next, assuming we had a couple more hours to kill, but we were paged & told to meet Joshua in his room in 10 minutes!

 The procedure went incredibly fast, just over an hour! Joshua was returned to us, still sleeping. We were told he needed to lay flat for 4 hours & if everything went smoothly, he could be released.  I was worried this would be the hardest part of the day, but he slept the whole time. We ended up needing to wake him & feed him, to make sure he could keep his food down so we could leave.

We woke him & the first thing he said was, "Where's my Lego's?" My mom had sent a few presents for him to the hospital, and it was the first thing on his mind. We fed him chicken nuggets and french fries, as well as a ton of Gatorade & we were sent on our way!

It really couldn't have gone any better!

And now for the findings...Dr. Meadows, the cardiologist, said that the procedure went exactly how they hoped. He said Josh's numbers couldn't have been any better & he is a candidate for the third surgery, the Fontan.  He said "Josh is a glowing example of what we hope to see!" He went on to say that Joshua's once paralyzed diaphragm wants to move. It was paralyzed after his first surgery & he was unable to breath with it obstructing his left lung. He had surgery to have it tacked down (plicated) when he was about 3 weeks old. The good news is, it wants to work again, but in order to allow it to, they may need to operate to un-do the plication. Dr. Meadows said that Josh's heart looks so good that he is fairly certain it's the diaphragm that has caused him to work so hard to breath lately.  

His shortness of breath has been quite worrisome to me, so its a miracle to learn it has nothing to do with his heart!  And whats better, its can possibly be fixed!

As you can imagine our prayers have been answered.  We are so incredibly grateful. I don't have the words to express just how blessed we feel today.

Thank you all so much for your thoughts, prayers and support, it really does help to feel so much love!

And thank you to the staff at UCSF, you're all amazing!

(all photos were taken post-cath)

Great news....

I'll post all about it tomorrow!

Today is the day...

Today is Joshua's cath at UCSF.  He is scheduled to be the second case of the day. Please say a little prayer for us.  I will do my best to update if I have an opportunity.

Once there was a snowman...

Maybe his proudest moment!!!

(he had help:)

Sweetheart!

 

My little sweetheart painted me "heartses" on Christmas morning! Sweetest thing ever!!!

Congrats Grad!

Today was Joshua's last day in the nursery at church. In 2011 he'll be a Sunbeam!! He will get to go to primary with Abby & Callie! We're all so excited!

Josh talk

 

Yes, I am using another picture of Josh in his jammies...I know, this is 3 posts in a row. I will take new pictures soon!

Anyway, I wanted to write down some of Joshua's vocabulary because it makes us all laugh daily! Josh can say any word he wants to, but lately he makes up new words, shortens words, gives people nicknames etc & I want to write them down so I never forget!

Momers - Mom

Abbers - Abby

Callers - Callie

Sammy boo - Sam

Weedow weedow - Dad

bo-bee - pacifier, aka bobo (which he hardly uses anymore:)

chocolate go-gee - chocolate milk

wad - water

nummers - his medicine

troubie - trouble

Cutie matootie - this is what he calls cute babies

Of course now that I'm making an effort to remember these silly words, I can't! I'll have to keep adding to this post as I hear them!

Dear Santa,

You don't scare me one bit!

love,

Joshua

p.s. But Sammy doesn't like you so much!

family picture...not quite!

When the kids put on their Christmas jammies for the first time, I couldn't help but line them up for a quick family picture. It only took about 2 minutes before it turned into a dog pile. Better luck next time, I suppose. :)

update & cath date

 

A couple of weeks ago I spoke with the scheduling department at UCSF & scheduled Joshua's cath. Initially, we scheduled it for mid December, then I freaked out a bit & called back 5 minutes later & rescheduled it for early January. It is easier to digest knowing it's after the holidays, maybe more importantly 'next year'.

So we are on the books.

Yikes.

And phew.

Clearly, I don't know how I feel about it yet. 

What I do know is, the pacemaker adjustment seems to be helping Josh. It's subtle, but definitely improvement!!!

So the plan from now until January is to relax and enjoy ourselves.

That's the plan!

Happy Halloween!

Love,

Batman & Robin

Meeting Paul...

Today was a big day for Joshua, for a couple of reasons...
For one thing, after Joshua's appointment on Monday, Dr. Rivera contacted me & told me he had been thinking a lot about Joshua. He told me he wanted to adjust his pacemaker settings in order to allow his heart more rest. The logic makes a lot of sense & he had it adjusted this afternoon. I am excited for this change, it will allow his heart to beat 20 beats less per minute when he's resting! Hello weight gain, hello energy!!!
We are very excited about this development & are very hopeful we'll see results!
And the other reason it was a big day - we met the infamous Paul Cardell in the flesh!!! We listened to his story, his testimony & his amazing music. Amazing, amazing and some more amazing!
I seriously felt like a 12 year old meeting JBiebs. Okay, that sounds weird...what I mean is, I was excited, nervous & emotional (he surely thought I was unstable). Nonetheless, it was really great to meet him, he was such a genuinely nice guy. I was hoping his wife & daughter would be there too. She is a remarkable woman & his daughter is a doll.
I highly recommend his CD's & though I have yet to read it, his book..he's an inspiration!

The Big Cardiology Check Up

Today was the day. Joshua spent the afternoon at his cardiology appointment & it went well. He was a good boy, a little nervous at first, but very good. 
So here's what we learned.... Joshua's heart is still doing well.  However, he is at a point where we can get the ball rolling on the Fontan (Joshua's next open-heart surgery), if we choose. We have some say in the matter,  because he is stable enough that we can do it when it's convenient. I don't know that there is ever a convenient time for open heart surgery...but since it's inevitable, it's nice that we have some say in the matter.
We went into the appointment today knowing that the time for surgery is approaching. After more discussion, Jon & I decided to have Joshua's case turned over to the doctors at UCSF for review.  If they give us the go-ahead, Joshua will have a cath scheduled some time in the next couple months (probably by the end of the year) & then surgery within six months of the cath. 
We are very happy to see that Joshua's heart is holding steady. He was using his pacemaker today when he was being examined, which is the first time we've been aware of him using it at all. The doctors had previously discussed having it removed during the Fontan, since it wasn't being used. That's no longer the case & he'll keep it. The pacemaker gives me reassurance. I have grown to like it, so this news is ok in my book.
Another concern we've had, as I have mentioned, is his shortness of breath. He gets winded so easily & Dr. Rivera suggested it could be asthma. I am not certain that's the case, but he prescribed a breathing treatment to try on Joshua before activity and/or when he's sick. We are going to give it a shot. I'm really hoping it helps & if it does, it'll be amazing & who knows, maybe we'll choose to wait on the Fontan a bit longer. Our main concern right now is Josh's decreasing activity level...so if this breathing treatment helps, then we are in good shape!!!
We feel incredibly blessed to be in this position. We are so grateful that we have flexibility in scheduling & a stable little boy. We'll keep you posted once we hear back from UCSF with their game plan.

cheap shot

Sam is notorious for taking cheap shots on Joshua. He's only a 1 year old, so it's to be expected. Tonight after getting hit upside the head with a toy truck, Joshua said to Sam in a deep voice, "I'm gonna roll you out like play dough, Boy."

Them are fightn' words.

An update - weigh in-

Remember when I posted about Joshua's weight gain dilemma a couple of weeks ago? Well, I am happy to say, we've put your tips to good use! Joshua has been eating, eating, eating...every bite, and every sip, is packed with calories!
When I posted in desperation, Joshua weighed 27lbs 8oz. I have been conscious of everything I feed him and I weigh him daily. He now weighs, drum roll, please...29lbs 1.5oz!!! He has gained nearly 2lbs!!! I am so excited & feel like we are going to hit the 30lb mark by the end of the month!
I am so grateful for all of the great suggestions that were given. I don't feel overwhelmed by the task of growing him anymore. He's going to hit 35lbs like he needs to. I just need to stay the course.
In other Joshua news, he needed to have blood work done this week. I didn't post about it because I was feeling sick about having to do it. Blood draws & IVs are the worst, in case you didn't know (but if you're reading this, you probably know).
It was tough to watch, but it went as well as it could. Joshua knew what was going on when we entered the lab & didn't put up a fight. I was very surprised that he didn't resist. He gave the man his arm & when the needle entered (on the first poke, phew) he buried his head in my chest & cried. He told me, "momma it hurts me." That's the worst. But he stopped crying as soon as it was over. It really only lasted for about 8 seconds total. I am very grateful that it went so very smoothly. But even 8 seconds sucks when it's your baby suffering. Anyway, now it's over with & he wasn't traumatized.
His labs came back looking almost exactly as they did last year. Everything within the normal range, except for the red blood cell count, due to his low oxygen levels. Actually, that figure had slightly improved from last year's reading. Good news!
We are about 2 weeks off from his next major appointment. I am feeling some anxiety.  I am really not a huge worrier when it comes to Joshua. I definitely worry, but I never freak myself out with awful thoughts. I take his journey one day at a time. I don't want to spend my time worrying when he's healthy because heaven forbid he become seriously ill, I would regret that I didn't simply enjoy the time we had when he was healthy.
With that said, Joshua just doesn't look so good lately. He is very blue & very winded when he plays. He plays very hard. When he's just hanging out, he looks just fine, but he isn't one for "just hanging out" and the result is a blue, winded kid. And so I'm worried.
We should get a game plan for the Fontan at the appointment. That may mean we are put on the books right away, or it may mean we are told we aiming for Spring. Either way, I will feel better after talking with Dr. Rivera, he's so good at his job, we trust him, we love him.
I will keep you posted when we find out more...thanks again for the food suggestions, they are certainly working:)

Sweetness

Tonight as I was saying goodnight to the girls, I heard Joshua repeatedly calling my name. He seemed excited, so I was curious to learn why he needed me so badly. He told me "I takeded care of Sammy for you mom!"...Some how, he got Sammy to sleep, right on the family room floor! About 10 minutes later, I found this...

So sweet.

Shhhhhh!

I took the kids to pick up some new speakers for my computer at an electronics store. It was the type of store where they inspect your receipt as you leave, to make sure you got everything you purchased (really they are making sure your not stealing, but it sounds nicer when they pretend like they are being helpful).  As I pushed our shopping cart to the exit, in attempt to distract Josh from the gumball machines, I asked Josh if he would show the man waiting at the door our receipt. Then as I stopped the cart at the aforementioned man, Joshua looked at me and asked, "You mean this big fat guy here, mom?"
Ugh.
Josh is lucky he's so cute.

The BIG day!

Joshua just celebrated his Birthday & he turned...

Wait a minute...that's not quite right! Lets try that again...

That's better!
Joshua turned 3 on September 17th, and as it turns out, my boy is currently obsessed with baseball! He absolutely loves The Sandlot movie & as a result dreams of nothing but playing ball! It wasn't hard shopping...I knew exactly what to get...

In the space of 5 seconds all his dreams came true! I wish everyone were as easy to please!

After opening some of his gifts, we headed to his party!

(He wears his new "Benny hat" everywhere.  I think he's pretty cute in it!)

We kept the party simple. We invited a few buddies to come play baseball at the park to celebrate...

 

His girlfriends mostly socialized, while the guys played...

I think everyone had a good time!

 

Especially when it was time for the pinata!

This thing was nearly impossible to bust open...but after a good, long beating it finally released the goods!

When all was said & done, it was a good day!

Happy Birthday little buddy! Your third year is sure to be amazing!

3 in the morning

When this baby of mine wakes up tomorrow morning...

he's gonna be 3 years old! I am so excited!

(I just finished filling the pinata & it weighs more than him!!!)

calling all heart moms! (and anyone else who is willing to help)

 

This boy of mine is pretty much skin & bones. When I weighed him today he weighed a whopping 27lbs 8 oz. Yes, this means he's actually lost a little weight. At one point he was pushing 29lbs. 

Lately, I've had his weight on my mind & I've been weighing him weekly on my baby scale. He just isn't growing. The boy eats like it's his job, but it doesn't stick. His little heart is working so hard & using up all those calories.

He needs to gain weight in order to have the Fontan (his next surgery). He's showing signs that he's ready for surgery, however he hasn't hit the magical weight of 35lbs. Dr. Rivera thinks that if Joshua hit 32lbs we'd get the green light. So naturally, that's my goal, the big 3-2!

Now here is where you come in...I need some suggestions!  I know just about every heart mom has fought this battle. What do you feed your kid?  I try to feed him healthy foods -but- I'm not a total health nut. In other words, give me any suggestions, whether it's healthy or not. I'd like to hear what you have to say!  Joshua is not a picky eater at all, so your suggestions needn't be toddler friendly. But if they are toddler friendly, that's just great! Please, help!!!!

(by the way, did you know Joshua is potty trained? It was a very long process & he still loves the comfort of his diaper (which coincidentally I like)...but he's been doing his business on the potty for a few weeks straight:)

brotherly love

These little monkeys love to wrestle each other. All in good fun, but I'm not gonna lie, it does get ugly from time to time! I'm so glad they have each other to team up with, learn from, get in to mischief, etc. I love watching them & listening to their giggles!

I haven't done a lot of writing on this blog lately, but I've just been extra busy and honestly lazy too. I've been busy with the start of a new school year, new soccer teams and so on. And summer was a lazy time for us...we didn't have any commitments, just did as we pleased all summer. It was awesome.

Joshua has a full day at the cardiologist coming up next month, but part of me wants it to be sooner. He is so winded these days. He still does everything he used to, he just does it short of breath. It's so sad hearing a small boy out of breath. It isn't normal, but it's HLHS.  In that regard it's normal I suppose. But I don't like it.

I also don't like the fact that he's 2 years old and I should be watching him grow bigger, faster and stronger each day. Instead, he's hasn't gained any weight in 9 months, and he's slowly growing weaker. But, again that's HLHS.  

But on the other hand, what a wonderful time to be on the earth...he was born in an age where his condition can be a livable condition. We thank our Heavenly Father daily for that. And while the reality of HLHS isn't great, Joshua has thrived with this condition & surprised everyone. He'll continue to do so, I know it! 

Anyway, back to the original purpose of this post...I am so lucky to have these little guys in my life! I  Love them a lot.

my busy bee...

I love him. That's all.

tahoe...

We just got back from spending the week at Lake Tahoe, we had the best time!!! You wouldn't know it by his poker face, but Josh had the time of his life. It makes me laugh that he is 'too cool for school' at the tender age of 2...but that's my boy. Enjoy the pictures below!

Here he is riding Patty...Sam just joined him for a picture...Josh was the cowboy who rode this steed!

Riding the gondola to the top of Northstar, again too cool for school (trying his hardest not to show his excitement):

Singing primary songs on the drive (way too cool to let me document this):

But give him a little ice cream & he can't fight the feeling anymore:

 

The bath was pretty fun too:

Joshua also went Kayaking, which he loved:

Of course he spent hours digging in the sand:

 

And finally he played lots of football (we didn't bring the football, but where there's a will -or a pine cone- there's a way):

 

I was a little nervous about the elevation, but he did just fine. Every time I asked how he was feeling he said "I feeling happy!"  I am glad we did as Dr. Rivera suggested, we stuck with our plans and had a great time! Not a single regret, just a lot of good memories!

good enough to eat!

Now you see it...

& now you don't!

monkey business...