Gone Hollywood

Ok, well not exactly, but we have all been super excited here about Caydence's tv debut.

I think the day of surgery I was in kinda of a state of shock. I mean, my 3 year old kid was about to go in and have her 3rd and hopefully last open heart surgery. EVERY, and I do mean every emotion was pouring through us. Would she make it? Would it work? How long would she recover? We were excited, nervous, anxious, and ......

So in watching the video's of her surgery, it seems like I have my emotions in check, when in reality I am a mess. The video/camera's concept was weird. I woke up at 4 the day of surgery to get ready. They came at 6. Surgery started shortly after 8.  They were in and out the entire day. Joe had to work the night before so he got to the hospital at 7. Craziness.

And....after we got home, Children's sent me the pictures, which were hard to look at but not blood and guts. Then in this week's episode, I see the actual surgery. Heart open. Blood flowing to the bypass machine. Caydence being worked on. Reality. I mean, what did I expect? This was about her surgeon...it was just hard to watch.

Anywho, I wanted to consolidate all the links on one site for everyone.

Here's part 1 of Caydence's story. http://www.youtube.com/watch?v=J4A4FO0DlHw&sns=fb


and part 2- http://www.youtube.com/watch?v=J4A4FO0DlHw&list=FL3P5eClaasjTO17pQFCbSIQ&index=1


and meet Caydence- http://www.youtube.com/watch?v=WH2gbxBq-2g&feature=relmfu

and the local paper article- http://www.lewisvilleleader.com/articles/2011/08/15/lewisville_leader/news/9810.txt#share


They shot some video of us leaving the hospital, and I didn't see that in this week's episode, so I imagine that will in a  further episode.

Latest checkup

Caydence stopped all diuretics last week so we had to go in today for xrays to make sure the fluid was gone.

And it was.

Which means we don't have to go back to Children's for 6 months for her annual checkup.

Woooo hoooo!!!!!!!!!!!!!!!!

Here's a picture of our princess.

progressing

We went today for more xrays to make sure the fluid is staying gone, and it is!!!

So we were able to reduce her Lasix to once a day.

Then we are going to stop it all together on July 6th.

We go for xrays again on July 13th. If all looks good we will be off Lasix for good AND we won't have to go back until January! Woooohooooo!!!!!!!!!!!!!!

3 weeks post surgery

Well, it's been a while since I have updated the blog, and that's a good thing. That means things have gotten boring.

We went last Wednesday for another followup and SURPRISE all the fluid was GONE! Woo hooo!!!! So we were able to take 1 of the medicines off and now we are on a very low dose of another. This means Caydence is going potty less in the middle of the night and we are all sleeping more.

We did blood work and that all came out well too. Potassium is good. Kidneys are good.

We even got cleared to swim which we took full advantage of the next day at grandma's house!

So, where do we go from here.

This Wednesday we have to do another xray to make sure the fluid stays gone. If so, we will decrease more meds.

Then we will go back in 3 weeks for xray/labs and if everything looks good we will take her off all her diuretics.

Good stuff!!!!

Friday update

We went and had labs and xrays today. Everything is looking better everytime we go. Xray is getting clearer.

So, we are still on the diuretics, but we are on half of what we used to be on.

And we can take baths and swim again. Wooo hooo!

Also, we don't have to go back until Wednesday. Woo hoo!

That's about it for now. Hope u all have a good weekend.

Tuesday update

Xray was about the same so we are going to redo it tomorrow and hope it looks better. Then we are going to take Thursday off and Friday run labs and xrays again. She is peeing like a champ so in theory they xray should start to get better. The pills are working much better than the liquid. Hallelujah!!!

We had meals start on Saturday and we are so very thankful for them (Thank u Jen for organizing. U are the best). Joe is working nights this week so it is just me and Caydence, and well, she ain't down with me leaving to go cook.

Everyday gets slightly easier on her. I see her move more, eat more. It's still just 12 days past surgery so I am trying to keep that in mind, and forget about my messy house, and just love on my girl.

post op check up

Well, we made it home. Barely. She does have some fluid on her lungs....probably because I can't seem to get my kid to take her diuretics. Why not you ask? She's 3 for Pete's sake. She clenches her mouth and spits it out.

So, we are going to try a different approach. For some reason I seem to have better luck with pills so we converted her diuretics from liquids to pills.

I tried it tonight. I got one in her no problem. The 2nd one I put on ice cream and I think she tasted it. She took a sip of water and I am not sure if she spit some of the pill out or some of the ice cream. In any event it went 150% better than previously. No crying. No screaming. No frustration....and Caydence did good too. Hopefully we will see some good results.

So, we go back tomorrow and redo the labs and Xray. Please pray it looks better. They will only let us do outpatient for so long before they admit her and shove iv's up her arm.