a rega-ler boy

Josh asked me, "Mommy, when do I get to be a rega-ler boy who doesn't take lots of medicine?".

Breaks my heart. Some days this journey is really hard.

Fontan-iversary

Today marks 1 year since Joshua's Fontan. What a year it has been. It's really passed quickly & we've had a lot of ups and downs. We look forward to many, many more anniversaries with our Joshie. We are very blessed.

relief

What a week it has been. If you read my previous post you know that we were given some very unfortunate news last Wednesday.  News that Joshua's heart is rapidly failing him. The doctors weren't sure how to treat his failing heart since there was no clear reason for the digression. We took Joshua back to Dr. Rivera today to have a follow up echo, we had been praying for some encouraging news.  After taking a careful look at Josh's heart & comparing today's findings to the echo Josh had about a month ago, Dr. Rivera said that his function has actually slightly improved! Remember, on Wednesday we were told that his function had significantly decreased in a matter of weeks.  We feel so blessed, so much relief, so much gratitude, so much happiness...so much better!
His function is by no means great, but to hear that is isn't quickly deteriorating like they thought is nothing short of a miracle.
I know that many, many prayers were said on our behalf & many people fasted for Joshua. We are so thankful to all of you. I know that Heavenly Father heard us & we are so humbled that He answered our prayers in this way.
Joshua has a long way to go before his heart will be in good shape, but he is slowly headed in the right direction.  We'll be visiting Dr. Rivera more regularly, and he'll most likely tweak around his meds every now and then. But it's nothing we can't handle. :)

cath - post cath

Joshua had his cath on Wednesday. It's taking me a long time to update, I know.
The day started off well, with us leaving for the city at about 5:30am and getting to our appointment with time to spare.

 He was the second case of the day so they weren't in a huge rush. He was able to play & have a little fun before they mentioned the dreaded IV. 

When the time came for us to prepare him for the IV Josh became very anxious and cried that he didn't want one "because needles hurt."...But when it came down to it Josh suddenly stopped crying. He looked at me & tuned everything out. I didn't need to say a word to him we just looked at each other. I waited for him to scream as the nurse said "okay buddy, I'm going to do this on three. One... two & three." He didn't flinch. He just sat there calmly in Jon's arms looking at me. He was so mature about it. I've never seen him handle himself this way, it was such a relief.

 It wasn't long before the staff from the cath lab came to retrieve us. Joshua did a really good job staying calm and rolling with what ever came his way. The child life specialist had an ipad that she let Josh use & it was a great distraction! One day we'll get him one of his own. 

 Joshua went under the anesthesia quite well. He's thrashed around & had a hard time in the past, but this time I whispered into his ear as he slowly drifted off. It was peaceful.  And before we knew it, Jon & I had 3 hours to kill.  The hospital is located right near Golden Gate Park, it's such a beautiful place. We never venture far from the hospital, but it was nice to breathe in some fresh cool air as we waited.

 When he was wheeled back to us we noticed his lips weren't purple any more! We were given the report that everything went well & they were pleased with everything they saw.  Josh remained sedated for a while & eventually woke up to find some new Star Wars toys from Grandma. That made him pretty happy!

 He ate & drank an absurd amount of food in a short time & ended up vomiting it all back up. Not fun. He also woke up with a pretty unpleasant tummy ache, poor guy. But he was just happy to eat whatever he wanted & to play with his new presents.

 It wasn't until after Joshua's echo (that he had while still sedated) that we were once again approached by the doctor. This time he had some disappointing news. He told us that they discovered in the echo that Joshua's function was quite poor. So much so that the doctor told me parent to parent "This should worry you, this is very serious." He said that he compared the echo Josh just had, to one he had 3 weeks previous, he said that his function had significantly decreased in that 3 week span. 

 Needless to say, it was hard to hear. I have had a feeling Joshua hasn't been doing too well, so really it didn't shock me, but it's still so hard to hear. As far as the doctors can tell everything else looks pretty good, but his ventricle -the only one he's got- is failing him.   We'll take him to see his cardiologist this week & hope he can make sense of it all.  If nothing else we hope to learn that it isn't any worse.

We got back home just before mid-night on Wednesday, after a long, draining day. Things are slowly getting back to normal.  Crazy how in life your perspective can be changed in a matter of seconds. We are so grateful for all of the family & friends who have been fasting and praying for Joshua and our family. We definitely need all of the prayers and we are so touched knowing that he is loved by so many!