Family Picture

Family Picture
Christmas 2009

Wednesday, September 1, 2010

Echo's and EKG's and Horses OH MY!

Today Caroline had an 8:00am appointment at the Eli Manning Clinic with her Cardiologist.  These are the appointments that I (for lack of better words) "look forward" to the most because they answer the million dollar question. How is Caroline's HEART? I also dread these appointments because by the end of it I am more worn down than my child.  When you arrive in the basement of the children's hospital you wait for your name to be called to go sit at a desk for check in.  From there, we go around the corner and up the elevator to the Eli Manning Clinic and give our paperwork to the next lady at the desk and are given a "restaurant buzzer".. haha.. that's all I know to call them because its the same thing they give you when you are on the waiting list at a restaurant.  It never fails that, as soon as you are sitting down with your child, your buzzer goes off for the first time signaling it is time to go back for height and weight.  After height and weight (which WOULD be an easy task if Caroline didn't flip her lid!), you go back out with your buzzer to the waiting room.  The next time your buzzer goes off you are ready for your EKG. We got Caroline all undressed and ready for the EKG and as soon as they started putting the stickers on her chest she starting acting like a crazy person!  After we got Caroline calmed down for them to finish the EKG we had to get her back dressed and go BACK out to the waiting area. The 3rd time your buzzer goes off you are ready to come back for your echo.  We got Caroline undressed AGAIN and laid her down on the hospital bed/stretcher.  AGAIN, Caroline went nuts but I was prepared for this (or so I thought).  I brought her bubbles to blow while she was having her echo done because she loves bubbles.... or DID until today!  After a few minutes of her blood curdling screams I attempted to lay with her and help hold her down since she was "helping" the lady do the echo by grabbing the wand out of her hands every time she got a chance!  She pulled my hair and pulled my earrings, she pushed me away and finally she told me too "moozhe", which in Caroline's terms means MOVE!  Towards the end of the echo they turn the sound on to listen to the beat and blood flow and at that moment Caroline stopped crying. It sounded kind of like the galloping of horses and so, since she had been infatuated with the pictures of the horses in the clinic all morning, I told my 2 yr old that she had a horse in her heart.  The look of amazement and wonder that she gave me is hard to explain but it was all I could do to keep a straight face!  She listened so closely for the rest of the echo to the horse in her heart.  At the end of it they needed another picture of her Aorta and they needed to get right under her neck to get it. The sound it makes is different and kind of a soft swishing noise, and to Caroline's surprise, THIS is where the baby horse lives!  When the echo was finished we dressed Caroline again and were finally put in a room to wait for the doctor.  As I said before, our appointment started at 8am.... at 9:45 the doctor walked in because of an emergency in the unit that she had to oversee. It had been a LONG morning and Caroline was completely knocked out asleep!  I had the dreaded medicaid discussion with the doctor and she expressed that she didn't believe that it was a valid reason to push the surgery date sooner just to make sure that we beat the timing on Medicaid possibly closing the border and therefore not allowing us to go to Philly for surgery.  She did say though that she would contact the surgeon this afternoon and express our concerns and see what he said.  Her thoughts are that he will want to wait until spring to do the 3rd stage surgery.  At this point, there is nothing we can do other than hope and pray that the borders are not closed off before spring. I know that this does not make sense to a lot of people that we would want to go to Philadelphia, PA for surgery, but that is what we know and that is who knows Caroline's heart the best.  I know that we now have a surgeon here that can do it and has been successful since coming here in April, but it means a lot for me to go with my gut feeling and that is to go back to Philly.  Please continue to pray with us that in the end everything will work out and she will not be held back from going to PA for surgery.  Whew, after the long morning we had at UMC I am worn out and badly need an afternoon nap (yeh right)!  Maybe, JUST maybe, Caroline can find it in her horse filled heart to go to sleep early tonight so that I can get some extra ZzZzZ's in! Ta Ta for now! I will leave you with some pictures of Caroline eating a "chocolate sandwich" in other words Nutella on bread! This was a MAJOR breakthrough for her and I hope she eats MANY more chocolate sandwiches in the future!


2 comments:

  1. I love reading your blogs!!! I love seeing her progress & grow, from a heart mommy I also know it warms your heart so much. We will continue to pray for Caroline so she can have her surgery where you want her to. I know you are worried girl. ((( hugs )))

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  2. :) Thank you for continuing to read my ramblings and for keeping us in your prayers. This life us heart families live is not an easy one but it keeps us going to know that we have friends to lean on. <3

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