Patience Being Tested Again

This is Gracie right before her cath on Tuesday, doesn't she look EXCITED??

Thanks to my sister Stephanie, you have heard that we are back at our hotel on the hill. This time, it's not too much fun. (Not that it ever was!!)

Gracie just got back from her MRI. We talked to the neurologist and she said that Gracie did not have a stroke. They did not find any clotting or bleeding, the two causes of stroke. What they did find was that she had what they call 'watershed ischemia'. It happens when blood pressure drops suddenly. The effect on the body is the same as a stroke but stroke was not the cause. The neurologist said that she was going to list it as a brain injury, not a stroke. She said the good news is that it did not effect the outer part of the brain which effects thinking, it just effected the inner part of the right side of the brain which is the 'wiring'. She said that Gracie's brain will still think the same but won't be able to communicate to her left side the same. What that means is that she will probably have weakness with her left arm and left leg. She will have to have therapy to make it stronger but it will most likely never be as strong as the right side.

That is the brain injury side of things, now onto her heart. They don't know why her body dropped in blood pressure causing this brain injury. They feel that most likely it was due to poor heart function. Basically, her heart is starting to fail. They have put her on a blood pressure medication called Milrinone. This is a medication that is administered through an IV. They are saying that she will need to be on this until she gets a heart transplant. You cannot go home and be on this drug. So if you haven't read between the lines already, this means that we will have to stay here until she gets a heart transplant, which could be MONTHS!!!!! I'm sorry, but I feel like this is the straw that has broken the camel's back. I just don't know how much more my little family can go through. I don't mean to sound ungrateful for the opportunity to give new life to Gracie, I just wonder how my children will be able to handle me being gone all day everyday for months AGAIN.

I am posting right now because they kicked us out of the PICU to do a procedure on Gracie. They need to get access for blood draws etc. and a lot of her veins have failed, as they do with these little single ventricle heart babies so they kicked us out for 30-60 minutes and are doing a 'cut down' art line in her groin. She had a 'cut down' on her right wrist when she had her first surgery and it was one of the things that bothered me the most. Just the word 'cut down' sends chills down my spine. They don't want to go in her wrist again this time because they want to preserve all of the veins that they can in her upper body for her possible heart transplant. They did say that being in the hospital on Milrinone would put her higher on the list of getting a heart which is a good thing.

Thanks again to everyone for all of your love and support. I know I sound like a broken record but your well wishes and support is what gets us through our trying days.