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. 

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.

Fill number 2

Last week, when Addi went in for her fills, it was business as usual. Outpatient check in - normal. Pre-op vitals - normal, except that it was the same nurse as the week before, and she recognized us. We started up a friendly conversation, then she took us to the pre-op waiting room, and said, "see you next week." The child-life specialists came and visited us, and again recognized us - same general conversation. We had an anestheseologist that we had has previously, but not in the last 4 weeks, just one that I recognized, and I assurred him that he had done fabulously with Addi. I waited in the surgery waiting room, as I normally do, and was only there about 25 minutes when the phone rang, and they called for me. The doctor hadn't even been in to let me know how things had gone - no worries, I knew we were on the same page. Tolerable PACU time, with the same nurse as the week before. She recognized us as well, and took great care of Addison. She walked us over to the recovery area for another short stay, saying when she left, "See you next week, Addi." New nurse in recovery- there has to be one every visit. Addi kept insisting that it was time to go home, but wouldn't drink anything. No drink, no release. I finally told her that as soon as her apple juice was gone, we could go. So, Addi picked up her cup and downed the whole cup. She handed it back to me and said, "I want to go home now." About 10 minutes later, we were on our way. Addi complained most of the rest of the day that her bubbles hurt, but a little motrin worked on that. And by Thursday, she was back to normal. Another fill a success, but is it a good thing that they are starting to recognize us?