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, October 6, 2010

Popped

Last Saturday, we were showing off Addi's bubbles at a family party. I noticed that the one on the right side of her chest was starting to look a little abnormal. The incision was turning purple, which generally means that the skin is too thin, not a problem at the stage that we were at, but definitely something to keep an eye on.


By Sunday morning, the purple area was spreading and we were getting a little more concerned. Time to email the doctor. He got these pictures:


And then we waited. I was hoping for a response by Monday night, knowing that he would spend all day on Monday in surgery. This was exactly what this same side did last year, when we lost all of the skin from that expander.

Not hearing anything, I figured that he would look at the expander when we went in on Wednesday for her next fill and tried not to be too worried, all the while feeling that we were going to loose that skin. Well, as we were putting our Halloween decorations outside on Monday night, Addi was jumping around and tripped. She landed on her chest, and my heart sunk. I knew we were in trouble. We ran her into the house, only to find a small spot of blood on her shirt. Taking her shirt off, I expected to find a huge mess of blood, instead, I found this:


For a minute, we thought that the huge black spot was blood, but when we tried to blot it dry, the cloth came away clean. Nope, not blood: expander - sticking through her incision, which had popped open when she fell. We had a decision to make: take Addi to the emergency room to be looked at, or wait to get an appointment with the doctor. So, we called the doctor's office, got the number for the on call plastic surgeon and called him. He was very helpful, told us to cover the expander with gauze and get an appointment for Tuesday morning.
I called and left a message for the nurse to call, with no response on Tuesday morning, I sent her an email - no response. I waited until about 10:30 and called again, only to find out that the nurse I was trying to reach was out of town at a conference. So that explains it. They don't normally make appointments for the same day, but when I told the person that I talked to what I needed, she asked if we could be there in an hour - and we were on our way.

As we walked in to the clinic at Primary Children's, Dr. Siddiqi was walking down the hall. He stopped us with, "What happened?" And I answered with a simple, "She popped." His response, "Well, it's a good thing she's on the schedule for surgery tomorrow. I'll take a look at and see what we can do." He had no idea that we had been trying to get in contact with him, or that she was having a problem.

After waiting a bit, the plastic surgeon that I talked to the night before came in and took a look. He said that he thought we may be able to salvage at least some of the expanded skin. Dr. Siddiqi thought the same thing, and he again covered the hole and sent us home.

Again, the nurses recognized us - the check-in nurse, who said, "I think I checked her in 2 weeks ago." The nurse that came with her versed in pre-op, she was the new nurse last week, and let us know, the surgery nurse, who commented that she was the nurse when Addi's expanders had been placed 2 weeks ago, the other pre-op nurses, who all waved to Addi and told her they would see her next week as she was wheeled in to surgery. Even the receptionist in the surgery waiting room laughed when I told her I was back. She asked how many more times I had to do this. I told her too many, but by now, I think I deserve my own parking spot. She agreed.

So, today, for Addi's sedated fill appointment, that popped expander had to come out. By the time the expander came out, the skin retracted, some had to be excised due to slight infection starting, and there wasn't much left. He opted not to put her through the pain of a graft for that little amount of skin, and, thus, we lost the expanded skin. And it's ok. Addi has two good expanders still - they were filled more today as well, I fully agree with the doctors decision. The grafting process hurts. No point doing it more than we have to.

Recovery was not a fun experience this time. Addi was completely inconsolable, even after I had the nurse move the pulse/oxygen monitor from off of the thumb that she sucks, and had them use her own blanket. It worked for a minute, but not long. She kept telling me that she wanted it off and pointing to the IV. The nurse told her that if she would drink some apple juice, she would take the IV out, so drink she did - guzzled the whole cup. Finally, she calmed down enough to let me know that she had to us the bathroom, and we were quickly ushered in (thank goodness! I've been peed on in this process before). And after that, she was a lot more calm, even refusing to leave until the show that she was watching on TV was over. Ahhh my little couch potato!

She came home with a big bandage on her chest, stitches, a bandage over her IV hole that she won't let me touch, and a drain in her side. Next week, the last fill for the two remaining expanders, and drain removal. Fortunately, all done while Addi is sedated.

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