The journey of our Hypoplastic Left Heart Syndrome rocker baby, fighter from the beginning.
Thanks for all you've shown us, this is how we feel...
Wednesday, August 1, 2012
Pre-Surgical Orientation: July 31st, 2012
We made a trip down to Miami Children's Hospital yesterday, for pre-surgical orientation.
A woman sat with a small group of children and their parents, explaining to us in kid-friendly terms what to expect during our upcoming visit.
Jonas played with a toy thermometer, stethoscope, and blood pressure cuff.
We were given a tour of the pre- and post-op areas, as well as the waiting room, and the recovery room on the cardiac unit where Jonas will be staying overnight.
This was a really positive experience for him. He was sent home with his very own "Dr. bag", filled with mask, cap, tongue depressor, and other goodies to play with. He had fun playing dress up, calling himself Dr. Jonas.
I know it will be different for him on Friday, when he's there as a patient, instead of a visitor.
Returning to Miami Children's was a flood of emotions for me. I recounted our previous experiences to the guide, lump in my throat as I detailed our visits and his first two surgeries.
As we rounded the corner to PICU, I was triggered with the memory of watching him being wheeled away for his first surgery. Just four days old, Jonas was being taken away from me. I pushed through the memory of my whole body heaving with tears, unsure of what would happen next.
Friday's cardiac catheterization is a minimally invasive procedure. He's had it done before. It's not as bad as open heart surgery. This is all very logical and rational, but it doesn't stop the fear and worry. It doesn't quell the anxiety.
I don't want Jonas to be afraid or in pain. I can only do so much to protect him.
I will be by his side every step of the way. No one should ever have to go though multiple procedures, especially not a child as loving and amazing as my own.
Today, we're going to snuggle. Watch cartoons. Blow bubbles. Because these are things I can control, and enjoying our time together is the best way to destress.