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.

Friday, October 29, 2010

Grafting round 4

Last week, when Addi was sedated for her fill, the Doctor came out when he was done, sat down, and said, "I'm concerned."  This is something we had never heard before.  Even when Addi's leg was oozing and smelled really bad, the doctor was pretty optomistic about the whole thing.  Addi's skin was getting very thin, and he was worried about being able to wait until surgery day to get the maximum amount of skin.  I took Addi in this week, just to have it checked, and Dr. Siddiqi said to wait until Friday would be fine.  Although, he did say that the skin was very thin and ready to pop. 

Will and Addi in the pre-op waiting room.  Will was trying to talk Addi into sharing the video game controller.  She wasn't listening.

Fast forward to today - surgery day.  The scheduled 90 minute surgery was actually 2 1/2 hours long.  When we finally saw the doctor, he explained that the skin on Addi's chest was not useable when he took it off.  It was just too thin from being stretched too many times.  But, he said that the expander on her leg provided a lot of skin (whatever that means...). 


So, we were able to come home tonight, rather than spend the night, which is what we were planning on.  This is because only a partial graft was done rather than the full thickness graft that we were planning on.  She has a drain in her leg, and a new expander in her side, using new skin. 
The new expander is pretty big, he said that it will hold 440ccs of liquid, and he started the expansion with 40ccs today, while she was sedated.  We will do sedated fills starting next week for then next approximately 4 weeks, then do another grafting surgery. 



Just one cute thing from the hospital...we have been there so much that the nurses recognize us.  There is a child-life specialist that has become especially fond of Addi.  The pre-op nurse told us that MaryAnn had been looking for Addi, making sure she knew what time her surgery was and when she would be checking in.  As soon as we got into the pre-op waiting room, MaryAnn was right there with a new hospital buddy.  She told us that she had put aside a princess costume just for Addi, and went to get it.  She came back with the full costume:  cinderella dress, shoes, crown, and wand.  Unfortunately, the dress was too little, but that didn't deter MaryAnn.  She just went and got another outfit.  Pink this time, with a new wand, crown, and a tutu.  She let Addi keep everything except the dress from the other costume as well.  MaryAnn also told us thast she had asked to be paged when they were ready to take Addi back to surgery so that she could go into the OR with her and make sure she was taken care of. 


Addi after surgery.  She was a little sleepy this time. 

Now at home, Addi has watched a few movies, but is complaining that her eye hurts of all things.  We have tried the Visine, and Benedryl, and a call back up to the hospital is the next thing in order. 

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