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!!

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!

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!

    

Two Weeks

Two weeks.  We leave again for Chicago two weeks from tomorrow.  My next surgery is two weeks from this Thursday, which happens to be Thanksgiving.  And we return two weeks before Christmas.  Yes, it's going to be a busy holiday season!

It has been a wonderful few months since my last surgery, especially since I was able to play as a boy should be allowed to without regard for germs in disguise.  But it's time to start again, and we are gearing up.

My pre-op appointment was held this morning and everything seems to be fine, except that I am at the tail-end of a cold (we hope!).  My doctor gave mom a script in case I don't clear up by the end of this week.  But everything else is looking good.

About a month ago, Dr. Bauer asked mom for some updated pictures of me so he could begin planning this next round of expansion.  All of us are still on board, albeit cautiously, with Dr. B placing 4 expanders for this next round.  That sounds like a lot to handle, and it probably will be at the beginning.  But we know, from experience, that jumping in feet first to these difficult situations is the only way to do it.  I'm sure we will all adjust in time, and I only have to live with them for 12 weeks anyway.  If things go well -- if I get through this round sans infection, if my skin stretches well, and if I don't get sick too many times during expansion (requiring us to skip injections), this could very well be the last round of expanders.  We tread lightly, and don't have our hopes up too much, but it is a possibility that we pray for.
 
So, please think of me on December 8th, as I undergo this 5th surgery, and help us to pray for an infection-free and successful round of surgeries.  As always, we will keep everyone updated.  God bless.  

Round "1" is Officially Over

It's done.  I have made it from expander insertion to expansion to removal to healed.  Officially, this wasn't round #1, but it was the first successful round.  And it's over.

Yesterday, 4 weeks and 5 days after my removal surgery, the last of my wounds finally showed us that it had healed.  There is nothing left to do except to sit back and watch the scars begin to fade.  I am now gauze-free, ace wrap-free and worry-free for the next two months!  Surgery #5 is still three months away, but the germ consciousness will begin long before we leave.  Until then, we will savor the successes that we achieved in this round, and thank God for the gift that He has given me.  See for yourselves...

Over the last weekend, we celebrated this accomplishment and beat the scorching Phoenix heat by taking an impromptu trip to San Diego.  It was wonderful and we all had a great time.  It was just what we needed to wash away the last 4 months and re-energize the family.

Sis (below) and me (above) hanging out in Old Town

                                      

No sibling rivalry here!

I love to play "upside down Josh"!

Checking things out

First time at the beach.  Whoa, what is this stuff???

Well, whatever it is, it's hard to walk on!

Wooo, this water is ice cold!!!

My first carousel ride.  Sort of.  I didn't want to actually "ride" so mom just held me!

My first ferry boat ride!

A happy boy!

Flying a kite at Seaport Village

Man, this trip tuckered me out!

Healing Power

Yes, it's true.  I am healing.  And healing nicely.

When I last updated, my parents had noticed that my incision had opened, and they were worried about signs of infection.  Well, to tell the truth, it got worse before it got better.  A lot worse.  But the good news is that we are now in the upswing of "better".

A few days after the first little opening was discovered, a much larger opening appeared.  It was in the center of the back incision right under all the goop!  Mom was given instructions by Dr. Bauer's office to begin a new dressing routine of applying a wet-to-dry dressing three times a day.  This was intended to clean off the goop and help the new tissue to develop.  And, as usual, they were right.  The goop began to come off... but then mom and dad saw that my incision hadn't just split -- it had widened.  I had a hole in my back!  And a good sized one.  We never actually measured it, but it seemed to be about a half-inch or so wide. 

While that sounds pretty awful, it really wasn't that bad.  It looked bad, but it wasn't open to the inside of my body like the opening that occurred with my first surgery.  So it didn't need to be re-stitched, which was a blessing.  Dr. Bauer and Mim assured us that if we continued the wet-to-dry dressings the area would heal, and they were right.  Well, I don't want to get ahead of myself -- it hasn't healed yet.  But it is getting there.  Mom and dad have been on top of the triple dressings for a week and have seen a lot of improvement.  So maybe in another week, we can say goodbye to the ACE wraps.  Man, I am getting tired  of those (not to mention they don't make the 113 degree temperatures any easier).  Oh, and I am happy to report that the first little area that opened has healed up just fine.

August 14

August 17 (a clearer picture of how the stitches had entirely unraveled)

August 21

I also got my sutures out today!!  This was not fun.  We estimated about a hundred or so stitches that had to come out, and it ended up taking over an hour to get them all.  It was pretty predictable that it would be a difficult appointment, so mom arranged for Dr. Price's office to give me an anti-anxiety medication before we got started.  It's hard to say if it helped, but I was calm for about the first half of the removal.  The second half was rough, but that was probably a combination of me being tired of the restraint, the effects of the medication, and the pain caused by the removal itself.  And it did take a long time for the medication to wear off, during which I had some negative side-effects, so I'm not sure if we'll try that again.  But hey, it was worth a shot. 

So there it is.  We are very happy with how this is coming along.  Before we know it, all the redness and irritation will be gone and I will be left with nothing but a thin scar line.  What a miracle.   

Trouble is Lurking

There is something familiar going on.  Something we don't like.  Not at all.

As usual, we went in to Dr. B's office for one last check up before coming home on Monday.  At that time, we all noticed that the areas of new skin that link up to the nevus were reddening, and there was now some discharge coming from one of the reddened areas.  Mim and Susan told us that the skin was stressed, but that this was normal.  They warned that the incision may even open up, but if it does, not to worry.  There are stitches above the skin and stitches below the skin, so it will heal -- one way or another.  Another little surprise we got was that one of my drain tubes wasn't working, so they pulled it early.  Although there was still a lot of fluid, they hoped the other drain would get it.

Now we are home, and mom and dad are doing all the inspecting themselves.  Pretty quickly, mom noticed that the other drain tube wasn't working either.  She got the blessing to pull it, so now I get to be drain-free a little early.  That's not so bad except there is still a lot of fluid that has to find it's way somewhere.  It may leak out the incision, or it may re-absorb into the body.  It will resolve itself, we hear.  It will just take time.

Drain-free also means I can be bathed again.  As soon as she got the go-ahead, mom unwrapped me for a bath... and then that's when she saw it.  The incision has opened.  This unwanted familiarity comes from the recollection of what my incision looked like when it was infected back at the time of my first surgery... back when we had to entirely ditch an expansion.  The areas look (at least to our untrained eyes) exactly the same -- red, goopy, and just all-around bad.  And there is another coincidence -- the incision opened up on Post-Op Day 6 both times.

The redness is obvious, the discharge is mostly concentrated at the point in the middle, and the incision has opened just to the right of that point.  It is a small opening and probably can't be seen in this photo.

However, there are some big differences, for which we are grateful.  1) This is happening on expander removal rather than insertion.  There is no foreign body distracting my immune system which will help me to heal.  2) Although it looks bad, it is not likely infected.  Mom and dad will watch my behavior and temperature closely for signs of infection, but for now, no one is concerned about this.  3) Dr. Bauer assures us this is all normal, and that the incisions will heal.
       
Overall, I am doing great.  If you didn't see this, you would never know I'd had surgery one week ago today.  I am feeling good - and ready to run around as soon as I am allowed.  But for now, I am on restricted activity, and have to be bandaged up for another 2 weeks or so.  Once my stitches are removed in another 1 1/2 weeks, we'll all feel a bit better.  We'll keep you all posted on my progress.

The More the Merrier

That 'ol saying "The More the Merrier" has never been truer.  When we scheduled surgery #4 for August 4, we were placed on the same day as our nevus superhero and idol, Sully.  That alone was something for us to look forward to.  But then there was another.  And another.  In the end, we were able to share our surgery experience with SIX other families. 

Of course, the surgeries weren't all on the same day, but they were all within a few days of each other.  This gave us an idea: let's all stay at the same hotel!  And then we had an even better idea: lets have a party!!

So party we did.  On the Sunday evening of our stay, our spectacular hotel (which was new to us, but will from now on be the go-to for our surgery trips) allowed us to hold a party in their dining area.  And to make it an even better experience, we were also graced with the presence four other  nevus families who live in Illinois, Kristi (Dr. Bauer's office manager), and Dr. Bauer himself!  Like I said, the more the merrier.  And everybody had a fabulous time.

I'm sad to say that we are pretty much on a different surgical schedule than our friends from now on, and it is unlikely we will have another trip with so much wonderful company.  But we are grateful to have had them with us this last time.  We will definitely miss everyone, but we captured the moments of this trip as often as we could, and have a lot of photos to remind us how blessed we really are as a part of this Nevus Family.

Left to right, top to bottom: Dr. Bauer; Eric, Cherry and Ceci (Hong Kong), The Kings (IL), Katie and Daddy, Sylvia (IL), The Burmeisters (IL), The O'Bryans (MO), The Carraro's (Canada), Reid's daddy, Merilee and Brooklyn (MT), Reid and his mommy (IA), Zac and his mommy (AZ), me and my mommy, Sully and his mommy (SD) and Brookie's daddy and sis (MT)

The Core
My mommy, Merilee (Brookie's), Beth (Sully's), and Amie (Zac's)

Hey dude, how ya feeling?  Me?  I'm ready to go!

Me

Zac

My sis and Brookie

Hey, why is it raining?  We are supposed to be playing outside!

Reid (IA)

Mama, I want you!  Kristi, on the other hand is happy and beautiful!

It's ok, little bro, I've got ya.

Michael, one of our faves at the hotel

Sully and his mommy, holding the piece of AZ we brought him!

Katie and Zoie (Zac's sis), having fun at the hotel

Zac and me, shootin' the bull

Katie and Callie (Brooklyn's sis), after their makeovers at Glamour Girlz!

Overall, this was a great family trip... uh, minus the surgery