Sunday, March 04, 2012

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!


kirk and carrie said...

I think Josh is the most loved child I know. Before he was born people across the country were praying and fasting for him and sending such kind words and donations in his honor. Imagine that! What a special kid.

I'm glad that the appointment went smoothly (as far as from his eyes - not too much crying or bad feelings for a 4 year old). I am so sorry about the function of his ventricle. I wish there was something I could do. It seems like with Josh there are so many hurdles and terrible things he's faced and yet, so many positive things have come from each hurdle.

We love you so much, Josh! You are in our thoughts and prayers.

The Simmons Family said...

Allison...i am so sorry. We have heard those words many times before so I understand the fear. There are many medications that can help his function improve. Owen's function was poor and is now low normal.. We will keep Josh in our prayers. I'm glad the cath was successful!

Hetrick family said...

I am with Carrie. That Joshie is something special. Thank you for the detailed update. It is very emotional to read the details that make up the dr appts and surgeries you all handle so valiantly. Josh is amazing. And so are his parents. We are loving and praying for your little Star Wars Maniac :)

Craig Family said...

Ally....I'm so sorry about the terrible news you've had to hear. I know it must have been just as bad to have to add that entry to his blog.

We all love Joshie so much! He is a hero to everyone who knows him - & so are you. I don't know how you do it all.

Carrie is right....there were & still are so many people across the country praying for him & you all. Let us know what you hear from the cardiologist. I just keep thinking that if they sent him home, at least he is well right now. I'm hoping that the cardiologist will be able to work some "magic" and get Josh well for good.

Love you all!

Liz said...

Joshua is such a precious little warrior. I am new to your blog but already touched by his courage, as I am a heart kid myself. I'm glad to hear that his appointment went smoothly, but am saddened to hear of the news of his ventricle. Please know that there are many prayers and much love coming your way. You'll be in my thoughts. Love, Liz.

Jenny said...

Allison I'm so sorry- Keeping Joshua in our thoughts and prayers that his cardiologist will have a plan that will help his function. ((Hugs))

The Fiscus Family said...

Allison, we are sending love and prayers and thinking of you all so much. Josh, you are the bravest and toughest kid out there...we are praying that you stay strong! Anxious to hear how things go with his cardiologist.

Jim and Shana McGavock said...

Allison, I don't know how you do it! My heart aches for you. Josh is so lucky to have such a sweet & etarnal family.

Katie said...

My heart hurts for yours...Josh is such a tough kiddo and inspires us all. Joining you in prayer that his function will improve and peace & understanding in it all. Heart hugs...

Lisa said...

Thanks for the update! We'll keep him & your family in our prayers.
Take care!

Heidi McMillan said...

We have been praying for you guys all week. I am so sorry to hear about his poor function. Praying that his heart regains strength and the doctors are guided during this time. All our love!

The Smith's said...

I am so sorry to hear the news from the cath. I pray so much that through medication his heart function will improve dramatically. Joshua is such a star and unbelievably brave. Heart hugs!

rudysbeat said...

So sorry to hear this update. Sometimes the HLHS journey can be described as a rollercoaster, but other times it just feels like repeated kicks in the stomach. We're praying for Josh and your whole family.

Blessings and peace.

Rolf, Trish & family