Addi's custom expander came in this week, remember, she was scheduled for surgery today (March 24), but the Dr. decided to go out of town, so we moved it up one day, and she had it placed yesterday.
I want Addi to feel like she has some control over what happens to her as she gets older, so before we left for the hospital, I sat down with her and asked her if she remembered the medicine that they give before the doctor takes her back to the surgery room. She has fought us in the past about taking it, but I have insisted...it makes getting her under so much easier. When I started asking her about the medicine, Addi got a little apprehensive. And the morning went downhill from there. Addi kept asking if Dr. Siddiqi was going to hurt her, and when she was going to be done with the expanders, although she calls them bubbles.
We had to make a quick stop on the way to the hospital, and Will ran to take care of it. We were waiting in the car, where Addi wouldn't smile, or really even look at me. She was not happy that she was going to see Dr. Siddiqi.
MaryAnn, the friendly child-life specialist, who absolutely loves Addi came in just then with a personalized coloring book for Addi, some markers, and a toy, and assured us that she would be happy to go back with Addi. She also got Addi a princess car to drive back, and some wands. We love her!
It was quickly time for Addi to go back to the operating room, and she willingly climbed into the princess car, and started driving toward the door. She didn't make a sound. Even after we left her. Mary Ann came and talked to us after Addi was all the way under. She said that is the best Addi has ever done. She was so brave, climbed up on the table by herself, and only whimpered a little when the anesthesiologist put the mask on her. Success!
About an hour later, Dr. Siddiqi came out, surgery complete. He told us that he put about 60ccs of saline in the expander to start, which doesn't mean a whole lot until realize that her first expanders only held about 100ccs. This is one HUGE expander!
We watched movies all evening yesterday, and drugged her up before she went to sleep. This morning, she is doing good, but keeps telling me that her back itches. I am sure it is from the skin stretching so quickly, but it is really sensitive to pressure, so it hurts her when I put lotion on it.
We start expanding in 2 weeks, and have 4 expansions scheduled, although I am not sure we will use all of them. During the grafting surgery, Dr. Siddiqi will also do a little touch-up on the scars on her leg. Then it will be time for the toes. He is talking about a sedated laser treatment every 6 weeks, up to 6 times...do the math. That's 9 months of laser treatments. And probably won't clear her toes up completely, but enough so that if there was any new growth, we would be able to tell.
That's what we are going for after all.
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