Wednesday, January 12, 2011

More ups, more downs...and thoughts

When we got here this morning the Dr and nurses were all full of good news. They had started diuretics (to help you make more urine) yesterday and you have responded really well. You can see just by looking at you how much of the extra fluids you have shed. You face is half the size it was, and your sternum has shrunk noticeably.

Even more Iv's full of medications for you. Kinda looks like a Christmas tree

Amazing that you can be doing so extremely well and yet look so terrible

This is all great news because it means you might get your chest closed today. Yay! What a next big step that will be.

We keep pictures your Auntie Val took of your family and brother Pierce at the foot of your bed so you can see us.

But now it seems that the Lasix is working too well even though they turned it off a while ago. It seems you've lost too much fluids and now your blood pressure is dropping too low so they are replacing some of the fluids with normal saline and albumin, and restarting some of your blood pressure medicines.

None of this is unexpected. The Dr's warned us to expect this. We just don't know if this will keep you from getting your chest closed or not. I hope not.

If everything continues to go well then they will close your chest sometime today and then the plan is to extubate you (remove the breathing tube) tomorrow morning.

Both closing your chest and removing you from the breathing tube are big steps towards getting you home. Defiantly something to look forward to.

46 hours down much closer to getting you home

********Random thoughts*******

I hesitated at posting the picture of you after your surgery with your chest open. I was afraid it would be to graphic for most. I thought about putting it in a separate link that you had to chose to open to see it, that way the people who didn't want to see something like this could avoid it. I also thought about just posting a picture at an angle where you couldn't really see the chest thereby avoiding the problem all together but after thinking about it I deiced I didn't want to hide the reality of what you look like and what you are suffering through.

I did this because

1. I want YOU to see what you had to go through to live. What an incredibly strong heart warrior you are my beautiful brave baby boy.

2. Even though twice as many children die from CHD as from all forms of childhood cancers combined funding for pediatric cancer research is five times higher than funding for CHD and only 1% of every dollar raised for research goes toward pediatric cardiology.

Maybe we need to stop hiding the reality of what this disease is and what those afflicted with it and their families go through. Maybe pictures like yours will wake people up to the fact that this disease, along with many others, is extracting a terrible toll on our children and more needs to be done to prevent any more children from going through it.

So here you are my beautiful baby boy. With all the gory and graphic details here for all to see.

Wake up world (including me) wake up and see what this disease does. Wake up and see what they have to go through just for the chance at life. Wake up to the fact that Mason is one of the LUCKY ones because he gets a chance at life with surgery.

So many of our heart babies never even get that.


Valerie said... Best Blogger Tips

This is such great news. I am glad to hear everything is going as expected. I cannot wait to visit little Mason again. Thanks for keeping this blog updated, I can resist the urge to call/text/you. Still constantly praying.

sdiaz said... Best Blogger Tips

Amy, these posts are AMAZING and so touching! YOU are an amazing Mom who is so strong! I love you for that and Mason is gonna be the luckiest little boy alive to have you George and Pierce:)

Love, Aunt Stacy

The Houston Family said... Best Blogger Tips

THanks for the good news! Thanks for posting his picture. Before I had my heart baby I had no idea they left babies open after they had surgery. People do need to know what our kiddo's go through. Thanks for sharing. ((<3))

The Bagley Bunch said... Best Blogger Tips

Amazing news! SUCH a fighter!! Stay strong Mason...and parents!!!! Praying for you all :)

Michelle said... Best Blogger Tips

Oh Amy, my heart aches for you and your family. I can't tell you how useless I feel, you call me if you need anything. XOXO