"I'll hold still"

From our family blog dated July 7, 2009:

Every Tuesday, Addison and I make the drive across the valley to PCMC for an expander fill. Last week was her first fill, and she was miserable afterward. She cried almost until we got home, then fell asleep. Even the M&Ms that I gave her when she was done didn't appease her. Needless to say, I was a little apprehensive for this week. Addison was very cooperative this morning, I told her where we were going, she got in the car (wearing her Lightening McQueen slippers) and we were on our way.


Although they have taken all of the toys out of the waiting room, due to the swine flu threat, Addi is able to find things to entertain her until they call us back to the exam room. Dr. Siddiqi's secretary, Lindsey, is so cute. She calls us back, makes small talk for a minute, then goes to get the "expansion kit." Addi has never cared about the kit before - possibly due to the fact that there is usually a child-life specialist playing with her, which was not the case today, and Addi was watching. As soon as Lindsey brought the kit in, Addi looked at me and this is the conversation that we had:

Addi: "Mom, will you hold me?"
Me: "Yes, you can sit on my lap, and I will hold you."

Addi proceeded to climb over the arm of the chair and into my lap. Still watching Lindsey, Addi continuted:

"It's going to hurt."
Me: "Yep, it will hurt for a minute."
Addi (with a big sigh): "Ok, I'll hold still."


What a brave little girl. Even Dr. Siddiqi is impressed with how well she is handling all of the pokes. I am sure that it has something to do with the M&Ms and Slurpees that I get her after each appointment.

No swimming for the summer

When Addi had the expander put in her leg, the doctor left us with strict instructions and restrictions. The hardest being being that she is not to swim, and because of the placement of the expander, no wading in a pool either - too much risk of infection. Well, it's summer time and we spend a good portion of the summer in the pool. We found this cute whale that we hope will appease her while the others are swimming.  Sometimes, you have to get creative.

Dealing with the insurance company

Those insurance companies can be sneaky sometimes.  After sailing through the billing process through the first surgery, we should have known our luck was limited.  The hospital billed them for Addi's second surgery, but because we were released so late, they billed for an overnight stay.  The insurance company first requested all of Addi's chart notes, no problem, then denied the procedure to insert the second round of expanders because she had had the same thing done less than a year previously. 

Well, I fixed that!  I made called the insurance company and made them call the hospital while I was on the phone.  Once the two entities actually talked to each other, they got the problem solved, and they paid the claim without any further hand holding from me. 

Good thing we pushed to have Addi released when we did.

Three days later

It took all of 3 days for Addi to be back up and around.  She was trying to help mop the floor, swing on the swing set, and just be a kid.  Fortunately, we took the trampoline ladder down, so that option was out for her, much to her chagrin. 

We are really glad that we made the decision to start her surgeries when she was so young.  She bounces back so fast.

Starting round 2

For the second round expanders, the doctor opted to put her custom one over her knee, and then just one side of her chest.  She came through without any problems, and were told that when Addi had eaten something, and kept her oxygen levels up, we would be able to go home.

We talked the nurse into releasing Addi from the hospital at 9:00 that night. She refused to sleep in the bed there, preferring my lap instead. Those of you that have been there know that their chairs are not meant to be slept in, and I was not about to hold her all night in an uncomfortable chair! I had already done that for the majority of the day. We finally got Addi to eat M&M's, Fritos, and a popsicle - she had to eat before they would release her. She slept in our bed and did pretty well, only waking up twice when her pain meds wore off.


The next day, she was trying to get up and move, but the expander in her leg was causing her some discomfort. It was also quite bruised, which is normal, but makes it look a little rough. The expander in her chest seems to be causing no problems at all. She keeps asking us to kiss her leg better. It is absolutely heartbreaking to hear her say with tears in her voice, "Thanks, Dad", or "Can you kiss it better?", or "I have an owie!" She is insisting that the dog sit in the chair right next to her and be at her beck and call, not surprising since she did that last time as well. I give her a week before she is up to her old antics.

Scheduling the next round

April 2009 came, which was time to schedule Addi's next round of surgeries.  So, we took her to the plastic surgeon get her next surgery scheduled. He was very happy with the way her leg looks, and he measured for a custom expander for the next round, which will go over her knee. While the doctor and I were talking, Addison started pointing to her leg and jabbering away. I am sure that she was telling the doctor exactly what had happened to her and what was happening next, although neither of us could understand a word of what she said. Glad that she isn't emotionally scarred from the last surgery. We were then scheduled for June 12 to put the next expanders in - it takes 9 weeks to make a custom expander. Wish I would have known that two months before, but oh well.

Fast forward a year

During Addison's yearly appointment with her plastic surgeon, we discussed options for removal.  He still felt that the best way to remove the nevus would be through tissue expanders and then grafts.  He suggested that we wait until she turned 2, but we really didn't want to wait.  So, he allowed us to make the decision to start earlier.  She was scheduled for surgery to implant her expanders into her chest wall on September 10, 2008, but due to overscheduling, was bumped to September 12.  This is where frustration started to set in.  We had planned this day for months, it was changed the day before.  We had made arrangements for our other girls, people had taken off work, we had meals arranged, etc.  Things happen for a reason, however, and we waited the extra days, then went ahead.

The next week was a nightmare.  Poor Addison was in so much pain!  We basically sat and watched movies, with her on my lap.  Occassionally, she would call our dog, Emma, over to sit with us, and that seemed to help calm her down a bit.  After about a week, Addi seemed to adjust, or heal, and she went back to being her normal, happy girl. 

Two weeks after surgery, we started the fill process.  This required going to Primary Children's Hospital once a week for injections of saline into the expanders.  This, too, was not a fun experience, and we made it a habit to stop at the vending machine on the way out for a little treat.  We became good friends with the nurse, and Dr. Siddiqi.

Those expanders were a challenge for Addison.  Every time she would have them filled, she would have to readjust to walking.  The really messed with her balance.

Eight weeks later, the expanders were full, and she was ready for the grafts.  The day before Thanksgiving, Addison went in for her next surgery. 

Surgery went off without a hitch.  I don't remember how long we were waiting, seems like it was a couple of hours, and Dr. Siddiqi came to the waiting room to report that he had gotten quite a bit off the front of her leg, and was very happy with it.  That was encouraging.  When Addison was done in the recovery room, we were moved to a room.  Shortly thereafter, we discovered that Addi doesn't really tolerate Morphine, as she began throwing up.  Some anti-nausea medication in her IV, no more pajamas, and a dirty blanket later, and we were settled.  We spent the night in the hospital for pain management, most of the night was spent with Addi on my lap, and her funny little drains poking out of her back.  One of them came undone, and we both ended up with bloody discharge all over us.  When Dr. Siddiqi came in the next day to check on us and provide discharge orders, Addi was not happy to see him.  She immediately started crying, and was inconsolable, until we got in the car to come home. 

We were given instructions to not unwrap the bandage for 2 weeks to let it heal.  She was also not allowed to walk until further notice. We made her follow-up appointment, where we would be able to see what had been done for 2 weeks later.  That is a long time to wait!  Finally, we were able to see what had been done:

The doctor assurred us that is was looking the way that is was supposed to look, wrapped it back, still no walking, and we made another appointment to check on it.  It went like this for several weeks, although we were able to just send pictures after two visits, rather than drive back to the hospital, but after seeing the pictures, he wanted to check it in person, so we made the drive anyway.  Five weeks later, Addi was given the release to start walking again, and while she did occasionally disturb a small scab and cause bleeding, she was basically free until the next surgery, six months down the road.