One of our sweet little heart friends who has been waiting for a new heart got the call last night.
She's been in surgery since 4:00 this morning and the last update from her mom said that the heart is beating.
I've been in tears all morning...so happy and grateful for sweet little Miss K's new chance at life, and sad for the family that is mourning the loss of their little one.
This heart journey has taught me much about what it means to have empathy.
We took Em to the hospital bright and early this morning to have her echocardiogram.
The results of that echo are the bad news.
Let me say this first: Emily is one funny girl when she's on versed (a drug similar to laughing gas).
They gave her that before they placed her IV.
|placing the IV|
|waiting for the sedation to kick in|
|And 6 minutes later she was out|
So...I don't know how much detail I've ever given about Em's heart defect...probably not a lot because there are times the medical terminology goes right over my head.
Here's a picture of what Em's heart should look like and what it did look like when she was born:
Her main pulmonary valve (the part of the heart that says 'pulmonic stenosis') had no blood flow when she was born, meaning that neither of Emily's lungs were getting the blood they needed.
For her first week of life Emily was kept alive because of a medication they gave her, and when she was 6 days old they performed her first open heart surgery.
Dr. Kaza, Em's surgeon, placed a shunt to redirect the blood flow to Em's lungs, basically buying her enough time to grow big enough for her next surgery to be successful.
Her second open heart surgery was because of an infection she got in her incision, and in December she had her third surgery to 'repair' her heart.
The aorta was re-positioned, the hole in her heart (ventricle septal defect) was patched, the shunt was removed, the pulmonary valve was temporarily repaired, and her left pulmonary artery was ballooned open for the second time.
How was that for a lot of information?
If you're still reading, you deserve a medical degree.
Today's echo showed that Emily's left pulmonary artery has narrowed significantly, limiting the blood flow to her lung.
Her pulmonary valve is leaking more than they like to see, and has caused her right ventricle (RV) to become enlarged.
Within a month we will be taking our little lady back to the hospital for a procedure called a cardiac catheter. They will run a catheter through her leg up into her heart, and place a stent to hold her pulmonary artery open.
The next open heart surgery to do a full pulmonary valve replacement will most likely need to be within the next couple of years, rather than the five or six we were hoping for, and that will mean that the next open heart surgery after that will also be sooner than we anticipated.
It's not what we were hoping for but we'll adjust...because that's what we do.
Someone asked if it came down to it, would Emily be a candidate for a heart transplant.
From everything I've heard and researched, the answer is probably not.
Because of her heart's anatomy it would require both a heart and lung transplant, and from what I understand, they don't even do those in Utah. We would have to take her somewhere closer to sea level, and even then, the surgery doesn't have a high success rate.
Our little lady has a mission here on this earth, and I know she will be given the time to fulfill that mission. And we will continue to hope and pray that it's a long long long time.
That's all we can ask for any of us.
One last picture...taken yesterday when Em was playing peek a boo with her daddy.