Life could not be better!

I could hardly wait to get this out to you, so I just copied an e~mail I sent to our buddy Beth Fisher of KVBC Channel 3 news ~ She has been by our side this entire time, supporting us and trying to help us make some much needed changes in this state as far as healthcare is concerned.

We simply could not be more thrilled and excited!

Dr. Mayman said Matthew's leak is actually better than our last visit!!!!!!!!!!!!
CAN YOU BELIEVE IT!!!

It is truly a miracle..... in our wildest dreams, we could have never imagined hearing those words!!!!!!!!

Dr. Mayman pulled out the previous pictures of his heart and said that he can't really explain it ... only that it's rated a 3 now!!!

He said it will be "a while" before his next surgery ... sometime between one and five years... his guess would be closer to five years!!

Words can't describe how we feel. We are in heaven. Life could NOT be better for us than this very moment.

Dr. Mayman told me that he wants me to go home and finally enjoy life, enjoy Matthew, take him out and let him be a kid.

Tears are welling up in my eyes as I write this.
I am overjoyed.
This is as exciting as the day we were told we had more health insurance!!

For the first time in a long time, I feel that I have some peace!
I thank God.

My little guy and and upcoming ECHO

We are taking Matthew in on Monday to his pediatric cardiologist for an ECHO of his heart. I am very nervous about this ECHO. On December 1st, we were at the halfway mark for a third heart sugery.

Let me explain to those of you who don't already know this... Matthew had a (cadaver) valve replacement last March. It started leaking by May and was rated a 2. Docs rate the leak from 1 to 10, 10 meaning it's time for a valve change. On December 1st, it was rated a 4.7.

It has been almost 5 months and I'm so afraid it'll be an 8 or 9. My heart hurts when I think of it. I am trying to prepare myself for a surgery this year...well, as much as you can prepare yourself for heart surgery on your child!

All at the same time, I'm trying to have faith! I struggle with that part.

The problem w/ these cadaver valves ~ the surgeons can't say how long they will last. There are too many variables ... they can leak, they can calcify etc. It all depends on their little bodies. Each kid is different. To me... it doesn't seem to be a good sign that his leaked so soon. Well.. we'll find out soon enough ... With any luck, it'll only be a 5 or 6! I have posted a sketch of Matthew's heart right after this post.

I frequently think of what my e~buddy, Timmy from The Special Zipper says... " it's a roller coaster ride when you have a child with a congential heart defect." What a true statement. Tim is from Australia, he has had his fair share of scares and sugery w/ his adorable little cardiac boy Connor. If you get a chance, you should drop by his blog ...
he has written a sweet post about our other e~buddy Dan of 0ddness in England.
Dan has been MIA for a couple months now and we are trying to cheer him up.

I thank God for the support we get from other families of cardiac children.
And all of you, of course. Support is what helps get us thru it all.

Drawing of Matthew's heart

A heart transplant surgeon up at Stanford (Dr. Aziz) sketched this picture of Matthew's heart.

You can clearly see (in the center) the "new pulmonary artery" that Dr. Frank Hanley made for Matthew using cadaver tissue. You can even see the little stitches. Right above his new pulmonary artery, Dr. Hanley bound together those four collateral arteries and made them one.

It's no wonder this was a 9 hour surgery. Dr. Hanley amazes me, he is truly a miracle worker.
He is a true hero of the world... saving hundreds of critically sick babies a year.