The end of the line

There comes a point in the removal process when the decision needs to be made as to whether it is feasible to continue.  We are at that point.  Remember, Dr. Siddiqi is not comfortable grafting her toes and the very bottom of Addi's foot, he was recommending laser lightening so that we could monitor it for changes easier.

About two months ago, we saw Dr. Siddiqi, and he again said laser was the way to go, but he (read: Assistant Lindsay) wanted to check and see what laser would be best.  So we waited.  Lindsay was very good to update us on what she had found out, and these were our options:

• Primary Children's has a CO2 laser, but Dr. Siddiqi didn't feel it would penetrate deep enough on Addi.
• The University of Utah has other lasers, but the one that is best (a Qten laser that is usually used to remove tattoos) was broken, beyond repair, and was donated by the SLPD Gang Unit anyway, so the prospects of it being replaced are slim.
• Rent the Qten laser from the laser rental company.  But the laser is in California, and the cost to transport it every 6 weeks would be astronomical, and probably not covered by the insurance company.

Lindsay suggested that we look into going to an actual aesthetic laser center to finish Addi off.  She suggested the only one in Utah, which is located not far (about 10 minutes) from our house.  Yep, they have the laser.  Nope, they don't take any kind of insurance, nor will they even bill insurance.  We would be responsible for the total cost at the time of service, and have to hope for reimbursement.  Not to mention the sedation out of a hospital, on our 4 year old - If they would even sedate.

So, after a great many discussions, we have decided to stop the removal process at this point.  If, when she is older, Addi decides that she would like to have her toes lightened, we will look happily have it done.  I would like to have some scar revision done, but we will wait at least a year to make sure they are all healed.  For now, we have reached the end of the line.

She knows she's different

A while back, Addison started asking when her leg would look like everyone else's.  I told her that she was special and didn't need to look like everyone else.  But I took notice of the fact that she was starting to pick up on the difference between her skin and other kids'.

Addi has now taken it upon herself to answer the questions that people ask.  She was playing with the neighborhood kids, who stopped and asked what was wrong with her leg.  She stated, "It's a birthmark...come on, lets just play."

I'm glad that being different doesn't bug her.  I have noticed through Addi and the comments of other Nevus parents that these kids tend to be opinionated and let things roll off them.

And, I'm glad.

With the amount of surgery that we have been through, and the looks and comments that she has gotten, I'm glad that being different is good.

How's it lookin'

Addi's leg is looking better and better.  We are just waiting for a little bit more to heal.  This is what we are waiting for:

Wanna See?

We are at the "change the bandage everyday, and use these really expensive oil emulsion bandages, and gauze-that-the-insurance-doesn't-cover-because-they-are available-over-the-counter stage" of recovery with Addison.  She has decided this time that she will help, so she does the unwrapping - and does a pretty dang good job of it.

Addi still isn't allowed to walk, but she has figured out how to scoot all over, and crawls around pretty fast.   After some discussion with her pre-school teacher, Addi went back to school last week.  She was a little apprehensive to go.  She was afraid that the other kids would make fun of her.  I assured her that Mrs. Cossa wouldn't let them tease her, so she went, and had a great time.

The pictures on her were taken on Thursday, just one week and one day after surgery.  Since then, the heel portion has started to look worse, so we are having it checked out later today.  Other than that, it really does look good!

And, if you don't want to see the pictures, stop here.  If you would like to see them, scroll down.

The last graft

Addi's expander in her back was so big, and her skin so pliable, that it only took three times to get that thing completely full.  The doc decided to act quickly and get her graft done.  So, we moved it up.  

Because we were squeezed in at the last minute, Addi was the last case for Dr. Siddiqi for the day.  She wasn't scheduled for surgery until 4:25.  She had to go all day without eating.  This also meant that Mary Ann was leaving for the day as we got there.  Good thing for us, she has a friend named Morgan, who was more than willing to sit and play with Addi, and Addi let her go back to the OR to play as well.  No tears at all!

Of course, we had to have the sticker earrings to replace the ones that I took out that morning - which totally ticked her off, buy the way.

Addi waiting for Dr. Siddiqi.  She pretty much had the waiting room to herself.

One last look at her foot.  Most of this is gone, we think, haven't actually seen it.  

Somehow, the stars all aligned, because Dr. Siddiqi was running ahead of schedule.  I don't think that has ever happened before - EVER.  I'm not complaining at all, just pleasantly surprised as Addi walked back to the OR about 35 minutes before she was scheduled to .  

And then Addi messed up the doctor's on time streak for the day (we knew it would happen - 2 hours for her graft isn't enough).  She took just under 3 hours to have the graft done and have her back sewn back up.  She has been telling us since she woke up that her foot itches.  I'm not sure if that is because of the splint she has holding her foot immobile, or her bandage, or just the healing process.  The nurse says that is pretty normal, so we haven't really worried about it, just rubbed the bandage when she complains.  

And even after all that cutting and sewing, Dr. Siddiqi felt that it would be good to send Addi home, rather than keep her overnight in the hospital.  YES!  Addi slept in her own bed, all night long, and was fine.  

Addi isn't allowed to walk until after we see the doctor on Wednesday - he wants to sedate her to change the bandage, take out her drain, and remove her staples.  He is one smart man!

And sitting on the couch one day, Addi took a peek into her bandage, which is open at her toes.  They are still brown, and probably a little more brown than normal due to blood.  She was a bit upset and asked "Hey!  Why are my toes still brown?  Oh that's right, Dr. Siddiqi wants to laser them."  She definitely knows what is going on.

More than a baby bottle

Addi had her first fill of her expander this morning, which always makes for a bit of a stressful day for me. We had to be at the hospital at 8:00. We were a few minutes late...stupid traffic. There just isn't a great way to get to Primary Children's from our house. So we got there, and checked in on their little computer thingy and took our buzzer (like a waiting list buzzer from a restaurant...they just buzz it when they are ready to get the registration done). And we sat down to wait our turn. The other people in the room got registered, and moved on, then more people came and they started to get called. I was getting a little concerned when my phone rang. It was the hospital, asking how close we were...um, right here in your waiting room, where we have been for 30 minutes. They were ready and waiting to take Addi back to surgery. Just then, one of our favorite nurses came and asked if she could go and get Addi weighed, and started on all the initial stuff. Addi went right with her, and I went to get the registration papers signed.


Just as I was walking into the exam room where they had taken Addi, I noticed the nurse taking Addi's earrings out. This is something that has to be done, but always causes her a little stress, so I was just in time. She started sobbing uncontrollably, and I thought we may be in trouble. Our friend Mary Ann was right there, though, with plenty of toys and entertainment to keep Addi happy. She said that she had just gotten back from vacation and had gotten a bunch of toys that she had thought of Addi when she bought.

No Versed this time, Addi walked back to the operating room, jumped up on the table, and played for a minute. Mary Ann said that she just got mildly upset when they brought the mask out, but that she does better and better every time. Which, isn't necessarily a good thing - it means that she has been there way too much!

So, when Dr. Siddiqi came to find me, he had kind of a smirk on his face. We went into the consultation room, and our conversation went something like this:

Doc: "So, how much do you think we got in?"
Me: "Well, you put 60 in the first time, so I would guess somewhere around there."
Doc (grinning): "Higher."
Me: "I'm not sure you could get 100 in there."
Doc (looking rather pleased with himself): "240 ccs. We never would have been able to get that much in the clinic. Her skin was so loose, we just kept filling."

So, that cuts down on the number of fills that she will need to have, we will just take it week by week for now.

If you are keeping track, Addi now has 300ccs of liquid on her back. How much is that exactly? 10.1 ounces. That's more than a baby bottle holds!

And her recovery? When I went back to post-op, she was quietly watching TV. She had a little bit of pain medicine, but was totally calm. She told me when we were waiting to leave that she wanted "Wendy's chicken nuggets, with french fries, ice cream, and chocolate milk with a straw" when we got home. So, she got it. Spoiled girl!

Here we go again

And she's starting to remember.

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.

So, when we got to the hospital and got Addi all checked in, she was as cooperative as she normally is. She changed into her hospital pajamas all by herself, and let the nurses to their thing, checking her over. Then the nurse asked if we wanted her to have Versed, and I turned to Addi. I asked her if she wanted the medicine, and got an emphatic "NO." The nurse assured us that we had until about 15 minutes before surgery to change our minds. I told Addi that if she wanted to go back to the operating room with just MaryAnn to help her, that was fine, but if she thought she was going to cry, that we needed to give her the medicine.

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!

Dr. Siddiqi was actually running ahead of schedule, and came to talk to us for a few minutes before it was time to take Addi back. He looked her over, told us what exactly he had in mind for the rest of her foot, and then we discussed her toes. I reminded him that he had thought maybe laser would be the best treatment on those, and he still feels that is best. More on that later.

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.

Surgery date moved

Addi went to see the plastic surgeon this week.  He wanted to check on her healing progress, and measure her for her next expander, which, if you remember, was scheduled for March 2.  Her leg is looking SO good.  He is really happy with the way it is working.  Then Dr. Siddiqi measured her back to determine which expander would be best for her.  After looking at the samples of the expanders that are kept on hand, he wasn't satisfied with what was available.  I believe his comment was that they only expand three inches...he wants ten.  Ten inches!  Holy big expander! 

We have done the custom expander in the past.  The ordering/shipping process takes forever, which would push us way into the summer before Addi would be completely out of bandages.  Well, our good friend, Lindsey, the plastic surgery coordinator pulled one out of her bag of tricks once again.  She bypasses the hospital all together, called the manufacturer, faxed the order to them and asked them for the soonest guaranteed date for shipment is. 

The answer: March 21. 

Five weeks. 

And they overnight it, so we rescheduled her surgery to March 24...a date Dr. Siddiqi doesn't usually do surgery, but I'm not complaining.  We also scheduled every Wednesday for a sedation to fill that GIANT ten inch expander, and the grafting to be May 18.  Further out than I was anticipating, but not too bad considering. 

Dr. Siddiqi also wants to try to laser the nevus off of Addi's toes rather than trying to graft each of those little piggies.  So, I am not sure if that will happen in May or if we will have to wait a bit for that.  Only time will tell.

No more bandages

Addi had her grafting surgery seven weeks ago. She has been bandaged ever since, wearing slippers everywhere she went. So, we sent pictures to the doctor this week, and he said that her leg looks great, and that we no longer needed to bandage it! Woo hoo! She wore shoes to pre-school today, although she said that they were a little "squishy" on her toes. We are so happy with how this one looks.

This upper part hasn't been bandaged for some time now. I left in uncovered to breathe a few weeks ago, and she picked the scab off, but left this beautiful skin underneath, so I made the bandage smaller.

She picked off the little scabs at the bottom of her leg when she went down for her rest yesterday...a little blood, a bandage for the rest of the day, and today, all healed. Maybe that is why she needed to keep those crazy expensive bandages on for so long, so that she wouldn't pick at the darn thing.


And in other, related news, Addi will have another expander placed on March 2. We are on the downhill side of this whole surgery thing.