Right before the rug was pulled out from beneath us!

Saturday, April 16, 2011

Better Than He Was Before

In my head I keep hearing,” Gentlemen, we can rebuild him.  We have the technology. We have the capability to build the world’s first bionic man.  Jacob will be that man.  Better than he was before. Better, stronger, faster.”  Ok maybe not the first and definitely not faster, but his heart will be better and stronger…
We are flying to Boston in the morning. The first appointment is at 9 am Monday morning, Jake will have an Echocardiogram,  an MRI, and a Stress Echocardiography and Jenni is scheduled for a resting Echogradiogram.... all before our visit with the doctor at 12:30. On Tuesday, we have a consult with the doctor implanting the defibrillator.  Wednesday is the day we all get to breathe. It is the day Jake will get his little ICD security blanket. (The ICD will monitor the heart rhythm, identify abnormal heart rhythms and determine the appropriate therapy or shock to return his heartbeat to a normal rhythm.) Hopefully Jake will be released on Thursday and we can fly home Friday. 
It amazes me that this little box with some wires attached are going to be able to keep my little boys heart beating. It's hard to look at him and realize he could be taken from us. He looks so healthy. Even now that I know how sick his heart is, the only clue you'd have is how tired he is. He sleeps a lot. It is overwhelming to think of what could happened. We still have to make it to Wednesday. I have faith in God that everything will be work out. 
 I have to say I am AMAZED at the outpour of love, and support from family and friends. On Thursday, after the doctor had called, I called my sister, the next thing I knew she had  arranged our hotel stay and was able to get our airfare taken care of. I can’t even begin to tell you what a relief that was.  The last three days have been so crazy, and emotional.  That was one less huge thing I had to worry about. The hotel is right across the street from the hospital. 
Yesterday someone said to my husband,” Why Boston?” We have some good Cardiac Hospitals here in Florida.”  And yes we do, but when the CEO & founder of The Hypertrophic Cardiomyopathy  Association says,” You need to go to Boston.” You go to Boston. Period.  Please don't judge us for our choices, the way I see it, You don’t go looking for a discount plan when it’s your son’s heart. You go where the experts tell you to go. If it were your child what would you do?
Jake is in good spirits. He is not enjoying the 2000mg sodium limit on his daily food intake. Some friends and family stop by to wish Jake well in Boston, bringing him Superman under garments for his stay in the hospital. Thank you to all of you who are praying. 

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