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, December 1, 2010

Grafting...again

Addi had a grafting surgery, the ending of a very long round of tissue expanders. We have been doing her expansions under sedation, as I believe that I have mentioned before, so this was her 19th sedation, and we were definately ready for it to be over.


Last week, due to the projected "blizzard" in the valley, I chose to cancel the expansion, so she was one short of what she could have had, but still had quite a big bubble on her back. So we were scheduled for surgery at 1:45, but the room was running behind, and even Dr. Siddiqi was waiting. Addi finally got her versed about 2:45, and was really feeling it after being without food or water for so long. That's a good thing, by the way - I wish they sold versed at the pharmacy: amazing!

So, when they were ready for her, the "barking" anesthesologist came out to get her. No lie - he barks at the kids. We have had him before, and I was a little put off by him, but this time, he was great! And, when he barked, Addi barked back so they were fast friends.

Our good friend, Mary Ann, who is the child-life specialist, made sure that she was paged when Addi got there, and checked on her several times during our wait to make sure Addi was being entertained. Addi absolutely loves her! She hung out about the time that Addi would be going back to the OR and again went in to the room with her. Addi didn't even cry. She was so calm, and we could hear her laughing and playing as we walked away from her. That was a very reassuring sound!

Addi was scheduled for about 90 minutes in the OR, and we were waiting for the report from the doctor. It didn't come. After 2 1/2 hours, Will asked the waiting room ladies to call and check to see what was going on. It was just taking longer than they had planned, nothing was wrong, and we were told it would be about 15 more minutes. Thirty minutes later, Dr. Siddiqi came out. He was excited about the amount of skin that he was able to get. The Nevus is completely gone from her leg, he was able to do some without a graft, and used the skin from her back on the top and bottom parts of her leg.

We have had many people ask how many more surgeries Addi will need. The answer has always been, "not sure". So, I asked. We are looking at two more rounds, with her sedated fills, that is 10 or 11 more sedations. Totally doable!

So, Dr. Siddiqi sent us home, and Addi is sleeping comfortably in my bed.


Poor Will, he gets the couch.

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