Tuesday, December 27, 2011


Today marks one year to the day since my medical journey took off... pun intended!  2011 brought me 5 surgeries (unexpected and incomplete since 2010 promised only 4 and I am yet to be done), 5 trips to Chicago (including one emergency trip), 23 injections (1 with my first "round", 16 in the second, and 6 so far in the current), hundreds of stitches, 1 bacterial infection, and more than half of my nevus removed.  It also brought my family countless new "family" members.  So, overall, 2011 wasn't so bad.

Now, we are just days from entering 2012.  We hope and pray this is a year that brings a lot of joy and accomplishment in this journey, not just for me, but for many of my friends as well.  Sully, for one, is entering his LAST round, for sure (***knock on wood).  Aiden and Brayden may very well join this club too.  (And by they way, Brooklyn became nevus-free in 2011!)  My buddy Zac is a little more of a mystery, but we pray that 2012 brings him excellent results, at a minimum.  As for me, we'll find out in March.  If I do need another round, theoretically, it would run from August to October, so there is a realistic chance that I will be nevus-free in 2012 as well.  We are anxious to find out!

Until then, we are taking it slow and steady.  My second fill of this round was done yesterday, and it went perfectly, with the exception of my emotional meltdown.  Keeping me calm during the injections seems to be the challenge for mom and dad to face as we enter the new year.  But as far as the fill went, I did not feel any of the injections, and dad got 50 cc in the leg, 60 cc in the left back, and 70 cc in the right back.  We are really off to a good start with 240 in each back expander, and 130 in the leg for the current totals. 



Oh, and the scratching that was going on in the last post has pretty much subsided.  It was mostly just
the presence of stitches bothering me, as well as some mild eczema.  Seems like mom has it under control now.

Please continue to pray for all of us to have successful, infection-free rounds of expansion, and that we all become nevus-free in 2012.  HAPPY NEW YEAR!!

Tuesday, December 20, 2011

Cautiously Optimistic

It's been 12 days since my fifth surgery, and I dare say it's looking good.  My incisions have held up and started to heal nicely.  Dad pulled my drains on Sunday, and even though I had a mild cold, we were given the go-ahead to tackle the first "triple fill".  And personally, I am doing terrific. Again, you would never know what I've been through if we didn't tell you (and you didn't notice my bubbles!).  Mom says I'm as happy and charming as ever.

Everyone was a little nervous about beginning the fills, and although we were ok to go forward on Day 10, mom and dad were warned not to jump in to eagerly.  So, dad filled two 60 cc syringes, and one 30 cc syringe, and they planned to take it slow.  The only technical component that is different about doing the fills this time, other than that there is a third expander, is that the ports are under hairy skin and finding a way to seal the lidocaine is a challenge.  When dad accessed the first port, it seemed like I hadn't been numbed.  And, to top it off, the needle hit the side of the port and he had to stick me with a second needle.  But after that, it didn't seem like I felt anything.

The bigger challenge is not technical -- it's dealing with me emotionally.  Now that I am older, I am able to voice my displeasure.  Which I do.  For the entire process.  So, we are all going to have to figure out how to make this easier on me.  It will probably be a lot of "live and learn," and I bet we'll finally figure out the trick right at the end of this expansion!

All in all, the first fill of this round went fine.  Dad was able to inject the entire 60 into each back expander, and the entire 30 into my leg.  So I now stand at 180 in the left back, 170 in the right, and 80 in the leg.  One thing that is definitely different this time is that you can see the expanders early on.  It took a while to notice them through my clothes last time, but those back expanders are already visible now.  But that's ok, because the more visible they are, they bigger they are and the more skin I am making for Dr. Bauer to work with.

Left back expander with 180 cc and right back expander with 170 cc

Right leg expander with 80 cc

So, in general, things are going well.  It is early, so we are cautiously optimistic, but so far there is no need to fret.  We have one little issue to deal with, which is to determine the cause of some irritation I am having.  I started scratching heavily at my back the morning of surgery, and am still going for it now that the dressings are off.  Mom actually had to re-wrap me to keep my itchy fingers away from my stitches - which I scratched up and made bleed yesterday.  Thankfully, she already has an appointment with Dr. Price today, so hopefully we'll be able to get this under control soon.

As I bid adieu, let me wish you all the very happiest holiday season.  We are all very excited for Christmas in my house, and even more excited to bring in 2012, which we expect to be a wonderful year!

Saturday, December 10, 2011

I Survived #5!

It has been almost a year to the day since I started this adventure of trips to Chicago, tissue expansion and surgery.  This past Thursday, December 8, I went through my fifth surgery.  Looking back on it, this year has been eye-opening, life-changing, and wondrous... in both good and bad ways.

While mom and dad looked forward to getting back in the game, they were both very apprehensive about this surgery.  The plan was for me to get 4 expanders -- 2 in the back and one in each leg.  Although I have recovered ok from the last 2 surgeries, they feared that this one would be much harder on me.  Subsequent expander insertions can sometimes be manageable, but when new areas are "lifted," it is just as uncomfortable as the first time.  Additionally, when Dr. Bauer did get in there, he had some trouble maneuvering around the scar tissue, and they all thought that might cause some recovery trouble.  So, we approached with a bit more caution than usual.

Yes, this is me being cautious too -- even refused my hospital gown and my cape!  But that didn't stop me from being my happy self!

We had many surprises on this trip.  The first came came when we arrived at the hospital for surgery.  When the consent form was handed to mom and dad, they saw that Dr. Bauer had changed his mind and was planning to insert 3 expanders, instead of 4.  Dr. B later came in to explain.  He had re-evaluated the photos we sent over last month, and decided that there isn't enough nevus on the left side to require a thigh expander.  So, he ended up placing two 750 cc expanders in my back, vertical and side by side, and one 350 cc expander in my left posterior thigh.  During surgery, the right back was filled with 110 cc, the left with 120 cc, and the thigh with 50, so they are all basically 1/6 full already!

Surprise #2 came after the operation, when my recovery started out so well that we left the hospital just 6 hours after I came out of surgery.  Of course, I was very uncomfortable, which was expected.  But I was handling it well, which is the important part.  While mom and dad were afraid I would start out in a lot of pain, I showed them what a champ I am as a veteran of this process.

Getting some rest on mama's lap.
Having some milk!
Cuddling with my lion and new doggie and watching my favorite video.
I gave mom and dad yet another surprise two days later, when I became extremely uncomfortable, was difficult to console, and had gone 72 hours without eating anything solid.  At this point, I still wanted to be held constantly, and clutched on.  Thinking back to my first surgery and how I handled that recovery (when I had an infection that no one realized), mom began to worry something was wrong.  But then, my fourth and final surprise of this trip, by Saturday evening, I was suddenly almost my regular self.  I began to eat, started walking, was laughing and playing, and was going around the hotel room in search of my big sis!

So, here is where I stand...  I have 4 incisions, with two of them being in new areas.  The expander in my thigh is difficult to adjust to, and 2 of my ports are in the other thigh, making both legs uncomfortable.  It is somewhat hard to stand and walk, but I am working on that. 

We will begin expansions in about 10 days, but will take it slowly.  Our experience from the last round has definitely instilled in us that quality is more important than quantity when it comes to fills.  We have 12 weeks to work on these new "bubbles," and if all goes well, we will return to Chicago in the spring for their removal on March 1.  Then, we will find out if I am done with expansion.  So, this is very exciting, but we are also a bit anxious.

I am definitely off to a good start.  Not just from the amount of saline Dr. Bauer has started me with, but also because my incisions look great.  We pray that they keep looking good and heal nicely, and that I have a successful and infection-free expansion.  Please pray with us.

You can see the new back expanders here.
My thigh expander!
Lower left leg incision for port placement.

Saturday night and feeling better.

My first post-surgical steps on my own... looking for my sis!