Thursday, January 20, 2011


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!

Friday, January 14, 2011

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.

Saturday, January 08, 2011


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 happened that 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)

Friday, January 07, 2011

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.