Addison was born with a Giant Congenital Nevus on her left leg. The journey is a struggle. Decisions are hard. We hope that Addison's experience can help others dealing with the same issue. While we know that there are others that are more extreme, we hope that in sharing her story, we can provide support and encouragement. Leave a comment, let us know you've been here.

Wednesday, September 22, 2010

A minor stumbling block

Yesterday, we had an appointment to have Addi's "bubbles" filled for the first time. Will took the afternoon off so that he could be there with Addi. She was so happy to be seeing Dr. Siddiqi, until the resident came in instead. He was nice enough, about twice the size of Dr. Siddiqi, though. And she freaked. She didn't want him touching her. He felt around for her ports, and tickled her feet, trying to win her over, and she relaxed. A little. When the assistant brought in the equipment necessary for filling the expanders, she tensed right back up.


So, we got the expander in her leg expanded with 20cc of saline, and Dr. Siddiqi came in. He stopped the resident right there, looked at us, and asked how we felt about sedating her while they did the fill. Sounds good to me. We got on the schedule for this morning, first thing, and had to be at the hospital at 6:45 for her 8:15 sedation. I wasn't even aware that there were people out that early.

Perfect sedation, excellent fill, and we came home with the expanders in her chest filled with 40cc in one expander and 45cc in the other. That is double the amount that he even tries with her awake. The doctor was pretty happy with how much he was able to fill - not sure if this will speed up the process, get us more skin, or pop the expanders, we will have to wait and see.
We ran into a slight problem in the recovery room, however. Addi woke up very quickly and was not on any pain meds, so she was looking for me immediately. The nurse called to the waiting room and stressed that I needed to get in there immediately, and we ran (walked fast, really, but I had a hard time keeping up with the waiting room facilitator). So, after a lot of crying, a dose of tylenol for pain, lots of juice, and a bit of slushee, we were allowed to leave. Addi refused to let me carry her out, she had to walk - and I forgot her shoes - until we got half way to the elevators, then she stopped and looked at me. I picked her up and carried her the rest of the way out to the car.
She cried all morning long. That is a lot of expansion, and her skin was so tight. Fortunately, I still have the pain meds from the surgery 2 weeks ago, and I used it. She is doing better tonight, a little tender, and very moody.

Next fill: scheduled for sedation next Wednesday.

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