Almost there...

That sigh of relief has not yet arrived, but we are almost there.  Just about two weeks to go and we can breathe again.  But we have come a long way from the rocky start of this round, and things continue to be stable.  We'll take that!

My bubbles are really something!  And, if you can believe it, BOTH of my expanders have REACHED CAPACITY!!  Yup, we have met the 500cc goal for each expander, even though we have 2 fills left in this round!  Precisely, my expanders are currently at 545cc (left) and 500cc (right).  So while we have had a small share of problems over the last 10 weeks, God has certainly graced me with good volume.  We continue to pray that I do not develop any sort of infection or skin damage, and that the skin recovers nicely after surgery as well.  Your prayers for these things are appreciated as well.

Check these bad boys out...

We often get this question: "How in the world does Joshua sit down?"  And the answer is: "Just as he always has."  It's true - these expanders have not impeded me AT ALL.  I sit, I lay, I run, I play.  I do all the things I always did and I don't even notice these jugs.  They don't bother me in the bath.  They don't bother me in the car seat.  They don't bother me in bed.  Or anywhere else for that matter.  That said, I don't always choose to sit on my bottom.  It's just easier to sit on my knees.  But when I have to sit on my bottom, it's no problem.  What a relief that has been.

The real challenge is going to come AFTER this next surgery.  While there isn't much nevus left, this is going to be a big one.  It's a matter of getting to the area that we've been afraid of getting to all these years.  It has to be done; no doubt about that.  But I have a feeling I'm going to like it even less than I like the other removal surgeries I've gone through.  Please pray for me to have a good recovery, good healing, and good pain management.

Because we are still proceeding cautiously, we will probably combine the last two fills into one and just do it mid way through the rest of this round.  My expanders are very tight, and are not softening up to let much more saline in anyway.  So the plan, as long as Dr. B approves it, is to wait about 10 days, do one more fill, and be DONE!  We see no need to push the limits here.  Volume is good.  Skin is beautiful.  And we want to keep it that way.

We leave 2 weeks from tomorrow for surgery on June 13.  As I said, we are almost there.  Almost.  We'll let you know when we make it.

Stability... and Happy Birthday to ME!

I am now a little over half way through this round.  We return to Chicago in just about 5 weeks, actually.  In  my last post, I emphasized that we are proceeding cautiously, and that has not changed.  There have been a few more minor complications since then, though things appear stable for now.  Stability is good, and we are happy not to push the limits this round.  We just want to make it to the scheduled surgery date.

A few weeks ago, the area of my right stitches began to bleed.  It was strange, and I've never had problems with my sutures in the past (during expansion, generally the sutures are left in).   Mim thought the area may recover if we ditch the stitches, so mom called up Kellie (my amazing dermatology RN at PCH), who graciously invited us down right away for a suture removal in the office.  I handled the procedure like a champ, which is my standard demeanor when it comes to all things nevus these days.  And within a few days, the area was healed and looking great.  We were back on track and able to resume injections.

Then the left side started showing signs of irritation.  Here we go again, mom and dad thought.  Except that, banking on my good behavior for the suture removal with Kellie, they decided to remove my stitches at home!  And they did.  And I was a champ.  Again.

So now both sides are sans sutures, are healed up, and are looking good.  The expanders go back and forth from having a bit of a pinkish/reddish tint to normal, and generally we believe it's from the pressure and friction that results any time I sit, lay, or move around.  So, pretty much, they are always discolored a little.  As long as the color isn't caused by infection, it should hopefully not be a problem.

With all this extra excitement, mom and dad are doing my injections very carefully.  They have yet to fill either expander as much as they could.  That said, the expanders are still filling very nicely.  At this point, the left is at 465cc and the right is at 390cc, and theoretically, there are 5 fills to go.  Each expander is technically 500cc, but they can double their capacity if the skin allows, so even though we will reach 500cc soon on that left one, the injections should still be ongoing for a while.

Check out my bubbles.  Yep, I've got some "back"...

They are looking good indeed.  At this point, I'm not having much trouble sitting down, so my activity is still relatively normal.  I occasionally get some chafing but we have a variety of remedies for that.  So we are happy with where we stand, and pray that things continue to be stable so that I make it to my surgery date of June 13.  Please pray with us that the incisions keep looking good, infection does not develop, and I have no additional complications.  

Oh, and we've had one more bout of excitement since the last post.... I turned THREE!!!  Yup, I had a birthday, and what a birthday it was!  Mom and dad rented a FIRETRUCK for my party.  It was so awesome!  My buddies and I all had the best time.  Take a gander...

BFF and nevus buddy Brayden didn't want to be
in the firetruck pic (above) but he sure
was there and he sure did have fun!

Yes, mom and dad sure do know how to make my birthday memorable!  I was the VIP!!  I got to sit in the driver's seat, ring the siren, light the lights, try on the gear, play with the hoses, and go for a ride.

Everyone had a fantastic time, and I am so excited to be the big 3 now!                                                    

Proceeding with Caution

The first few weeks of this expansion have been interesting.  For now, things are on track.  However, we hit a bump in the road right before we had planned my first injection, 2 1/2 weeks ago. Generally, by day 10 post-op, my incisions should appear to be stable and healed.  My drains can be removed and I can be bathed.  And we can proceed with the injection.   This round, we did not meet these milestones as scheduled.

Mom and dad removed my drains a day early, which was nice.  Unfortunately, at that time, mom noticed that my right incision looked a little unusual.  The left, however, looked just as it should, and was healing nicely.  She talked to Dr. Bauer and watched it a few days.  And, being cautious, they postponed the first injection.  Four days later, when the incision had not yet healed, Dr. Bauer decided I should have a round of Cipro, an extremely hefty antibiotic that is the one and only oral that can target the bacteria I have had issues with (Pseudomonas... oh how we hate to spar with that stuff!).  While it was not ideal for me to take this antibiotic (it is not super-safe for kids of any age and has some very serious risks), Dr. Bauer thought that one week of the stuff would be safe and could really help.  Which it did.

Within about 36 hours, there was a very noticeable improvement in my right incision.  What does this mean?  We don't know for sure, but it seems very likely that the Pseudomonas was preventing the incision from healing, even though it had not yet activated an infection.  After a week, the incision was looking really good.  And today, it is fully healed.  We pray it remains healed and that the Cipro did its job well enough that the bacteria remains at bay for the remainder of my expansion.

The good news is that although we missed my first scheduled injection, we have definitely made up for the missed volume in the two we have done since then.  When we started, we took it easy, but dad was still able to push 60cc into each expander!  And the following week, dad pushed 90cc into my left expander and another 60 into my right.  To put this in perspective, my expanders are each 500cc-sized. So, after only two injections, one of them is HALF full (the left is at 250) and the other trails that just a little (the right is at 210)!  This is excellent progress!  We acknowledge that these numbers are a bit inflated because the missed week, followed by the "easy" week, probably left some extra room for catching up.  We don't expect such great numbers in the next injection, if it proceeds as scheduled.  But we are very happy with the numbers as they are now.

An old pro!  Perfectly happy as dad does my injection.

After the first injection - left at 160cc and right at 150cc

And now... left at 250cc and right at 210cc

Mom and dad continue to watch my incisions very closely, and are treating them with aquaphor on a daily basis.  As long as they remain stable, we will fly back 8 weeks from today to have my expanders removed.  Which means we will hopefully get 8 more injections in as well.  While we are happy with the progress despite a few roadblocks in this round already, we definitely proceed with caution, and don't take the achievements for granted.  Please pray that I remain infection-free and complication-free for the remainder of this round.  Every day, I am another step closer to closing this chapter of my journey.  We are hopeful that will come this year.    

Number Nine was Mighty Fine!

Ahhh, here we are again.  At the top of a 12-week expansion.  Our fifth, to be exact.  The air is filled with impatience, nervousness, and anxiety, as usual.  But it is also filled with delight, amazement, and hope.  I had surgery #9 one week ago, and it went as well as it ever has.

The time leading up to this surgery was a little different than before for two reasons.  First, Dr. Bauer asked us to take an extended break after the last surgery to give my skin and body a little extra time to heal after so many traumas.  So, getting back into the game was a little tougher than usual because we were really enjoying the freedom.

But also, we had no idea what to expect out of this next surgery.  Dr. Bauer had previously talked about finishing up the rest of my bottom one side at a time, because it will be easier on me pain-management wise, and it will heal better.  So, we figured I would have two more rounds of expansion, one expander at a time.  However, to our surprise and delight, I got two expanders. And moreover, I have two 500cc expanders; I have never had this big of an expander in my thighs before!  They are positioned a little differently than they have been in the past, this time being in the back of my thighs.  And they are already filled with 100cc (left) and 90cc (right), so we're off to a good start!  This does not mean Dr. B has changed his mind.  But he will do what he can with the expanded skin in this next removal so that hopefully, we pray, THESE WILL BE MY LAST EXPANDERS!!!  Then I imagine I will go back for one last excision-only surgery.  The thought had not entered our minds that we could finish up this year, but now that is a real possibility.

That said, this is only the beginning.  We don't take one second of this process for granted, as a complication can arise at any time.  Such complications can be simple and easy to overcome, or they can cause a significant delay of expansion, or they can be detrimental to the expanders requiring early removal.  So we take it one day at a time, and are continuously thankful for each step forward that we are able to take.  We should be able to do my first injection this Sunday, as long as the cough I started a few days ago continues to dissipate.

If this expansion goes anything like our trip to Chicago, however, it will be a breeze, and will be over before we know it.  This was, without question, one of our best trips.  It was filled with old and new friends, and lots of love.  We were so blessed to be able to spend time with some other nevus families, two of whom we met for the first time in person.

When we arrived on Tuesday, we met up with the Young family, and got to spend time with baby Andrew, who had just undergone his first nevus and expander removal surgery.  And I'm not surprised to say he pulled through like a champ!

The Young family.
Ok, yes, we forgot to take a picture with them.
So this is from their personal collection.
How could you tell?

We also got to spend TWO days with our very good friends, the Carraro's.  Taelor, who is a real expansion idol, has four expanders in right now and will be having her removal surgery next week.  We pray for awesome results for her.  We had so much fun with them, and they got to show us around the amazing Ronald McDonald house in the city, where they are staying.  We were so impressed by the RMH, and maybe we'll get to stay there someday too.    

Katie and Taelor, on the roof of RMH

Mommy and Taelor's mommy.  Great buds!

And we got to meet the Nolasco family, who came to Dr. B all the way from the Philippines (because, yes, Dr. B is that good)!  My little buddy Wade also just went through his first round of expansion and he is as cute as a button!  I'm so glad we got the chance to spend some time with them.  And his mommy brought us an amazing basket of goodies, which was a wonderful surprise!  We are still enjoying the treats they brought!

Mommy and the Nolasco family

Of course, we always make a trip out to daddy's hometown in the country to spend time with his best buddy and family.  They are such amazing people, and we had a wonderful day together.  And, the Easter bunny brought my sis and I an early surprise to their house!!  Yes, we are loved.

Check out these awesome baskets!
Thank you Kari and Ron, er, I mean,
Peter Cottontail!

So yes, we kept very busy on this trip.  But we were able to do that because I did so amazingly well with my surgery.  In at 6 a.m., surgery at 7:30 a.m., out of the hospital at 2 p.m.!!!  I can't say I was totally happy that day, but I was drinking, eating, taking my meds and asking to go home so we blew that popsicle stand as quickly as we could!  And back at the hotel, I was much happier.  I was managing my pain like a hero, hardly crying at all this time.  And by Saturday evening (two days after surgery), I was back to myself, up and walking and even weaning off my pain meds!!

Sissy walked me up to pre-op for the first time!

Keeping warm while we wait...

So peaceful.  Sleeping off the anesthesia
with my BFF.

Trying to crack a smile while they check my vitals.

And look at me,
smiling away just hours after surgery!

And here they are - my new bubbles!!
500cc expanders in each back thigh.  

Chillin' like the big, brave boy I am while Susan changes my dressings.

Now, as much fun as we were having (I know, it sounds crazy to say that this surgery trip was "fun"), we were happy to come home because it was FREEZING in Chicago!  Even in late March, it was continuing to snow, and at one point, with wind chill, the temperature was NEGATIVE one!  We made the most of it, and we survived the cold temps, but we are glad to be home where we wake up to a comfortable 60 degrees.

Trying to catch a snowflake
as the snow begins to fall...

                                             

Look, the snow is sticking!!
Ok, can I come back inside now?

So, here we are, one week past surgery and three days from pulling my drains and beginning my injections.  We are praying, constantly, that this expansion goes smoothly.  That I get through this round without infection.  That my expanders fill to capacity and maybe even more.  And that we make it to my next surgery date, June 13.  Please pray with us.  We are so very thankful for your support, and all of the love we have received through this process.  It's just that much easier with you by our side.  

Living the Good Life

I know, I know.  It's been a while since I've updated.  Ok, a long while.  Partly, it's because I've enjoyed the blissful ignorance of a surgery-free life, even if only for a little while.  But partly, it's because I've been so busy enjoying myself on this break.

I am now officially 2 years into my nevus-removal.  Two weeks ago marked the 2nd anniversary of my first surgery.  With hope and prayers, I say that I just might be able to complete this process in a little over a year.

We will start up again exactly 10 weeks from today, when we fly back to Chicago. It will pretty much be the same old routine, except that this time, we really have no idea what's in store for surgery.  It may be an expander, or two. It  may be excision.  We are down to dealing with a very small amount of nevus, but also a very delicate area of my body.  And until we return to Highland Park Hospital on March 21, I don't think we'll know exactly what Dr. Bauer has in mind for this next round.

That said, we definitely have let a lot of things take our minds off of nevus removal and surgery.  We have taken advantage of every holiday activity out there, from Halloween fun farms to Christmas Zoo Lights.  We've done our best to celebrate every holiday this season to the max.  We even fit in a trip to Disneyland to boot.  And I have started both gymnastics and swimming lessons. Yes, this has been a wonderful break. And it's not over yet!

I know the photos you got to see in the previous post were not pretty ones.  So now that I am fully healed from this last round, here is the update.  It's looking and feeling great!   These were taken December 14, after healing from round #4 and surgery #8...

I'm not quite there, but darn I'm close.  I am not looking forward to starting up again.  But it has to be done.  And I am a trooper.  A warrior.  A hero.  I will get through it.  Check back in March, as there is more to come...

SOS

Wouldn't you know it, the "perfection" I was experiencing had to come to an end. Right?  I don't want to sound jaded or anything, but we just knew that it would. That being said, the issues that have come up are nothing new, nothing surprising. For the most part.

As usual with my removal surgery, I've had some wound issues.  Generally, my incision begins to split about a week post-op and it takes 4-6 weeks to heal up. Imagine our surprise when that split made an early appearance this time -- on Day 5.  Now, this has no significance.  We were just not expecting it so quickly.  Split #1 started out small, and quickly emerged into something more.  It was soonafter joined by splits #2 and #3.  What was more interesting to us was that the tear went into the nevus this time, rather than the new skin.  This does have significance. Positive significance.  The scar tissue that will form will not require any additional excision because it's in an area that will already be excised.  So this is a first for us and is definitely good news.

Mom and dad have been doing the wet to dry dressing three times a day, yada, yada, yada.  They know what to do.  They know it will heal.  They are not worried. Or at last they weren't until I had an unexplained fever last week and a little green substance coming from the two smaller wounds.

So, off to the doctor we went.  Nothing seemed too concerning, even with the otherwise symptomless fever, because there was no appearance of infection.  The wounds actually looked pretty good, all things considered.  Indeed, the largest one was healing faster than ever before.  But we take no chances with this process.  Better to have a professional take a peek.

Dr. Miller, my wonderful and amazing pediatrician, confirmed that there was no infection.  Whew!  But she too was concerned about the green substance.  No harm in doing a culture, so she cultured both smaller wounds.  Three days later, we heard a word we were hoping never to hear again... Pseudomonas.  That is the bacteria in my wounds.  That is the bacteria that utterly demolished my first round of expansion, caused an intense infection, and required emergency surgery just two weeks after my expanders went in.  Great.  

Ok, there are a couple of ways to look at this.  So, we are giving it our best to go the positive route.  Yes, the Pseudomonas is still present.  Apparently, it never left.  It is what the medical community calls "colonized" on my body.  Will it always be there?  Probably not.  But it is there now, and apparently all of the efforts mom and dad have put in to getting rid of it over the last almost-two-years have been fruitless.  However, we recognize that it has been almost two years since this stuff actually presented a problem.  I have kicked the tukas of seven other surgeries since that first awful experience without it presenting a problem.  So, there is the possibility that I will continue to get through surgery without infection.  Yes, the opposite possibility also looms.  But all we can do is push forward, and pray.  Pray for the best outcome, and pray that this bacteria, while on my body, remains inactive.

Yesterday, we wrapped this round up (at least when it comes to doctors, hopefully) with my suture removal.  As last time, it was performed in the O.R. while I was resting quietly under the influence of my dear friend, anesthesia.  So all that is left now is a little healing.  Everything looks good.  Everything is making progress.  Wound progress is slow, but we are used to that.  And, overall, we are VERY happy with the way this round went, my surgery, and the recovery period.  Lots of thanks are due -- to Dr. Bauer and his truly spectacular office - Mim, Susan and Kristi, to all of our understanding and helpful friends and family, to everyone who prays for us.  Thank you.

For your viewing pleasure, I saved the photos for the end.  They are graphic.  No surprise there, but you've been warned. Here is the chronology of my healing through today...

October 5, 1 day post-op,
during my first dressing change

October 9, split #1 rearing it's ugly head

October 10... yep, it's ugly!

October 14.  Healing has started in split #1,
but split #2 is starting to show (in the center).

October 16

October 18.  This is split #3.

Still October 18.  Split #1 looks very good,
believe it or not. Granulation tissue is
forming nicely.  Split #2 is in full-swing.

October 25.  Stitches are out.
A tacky, medicated bandage now covers
the smaller wounds. The larger is
now less a wound and more a healed area.
Hydrocortisone covers it three times a day
to help it make the final transition into scar tissue.

 

Wow. Just wow.

We have made it through my 8th surgery, and to say it went well is an understatement.  This entire round, from beginning through recovery, has been unexpectedly extraordinary.  We all know the expansion was completed without complication, and that we brought Dr. Bauer a lot of really beautiful new skin to work with.  But to actually see what he did with it continues to amaze us.  Dr. Bauer is an artist.  A miracle worker.  Our hero.  

I am doing exceptionally well.  The surgery took about 3 hours -- twice as long as Dr. Bauer predicted.  That made my parents very nervous, but this is not an uncomplicated process, and they are acutely aware of that fact.  When my parents found me in recovery, I had already been awakened from the anesthesia and given some morphine through my IV, which helped me fall back to sleep.  They watched me sleep for about an hour, until the nurses had to wake me to make sure I was ok.  We then went to a room, where I slept a bit more, had a few snacks, and asked to go home.  And, sure enough, we did!  We left the hospital a little less than 12 hours from the time the nurses took me back to surgery.

Once back at the hotel, I ate a full meal and even walked on my own!  No one could believe how well I was doing.  And all this was done on simple over-the-counter pain medications.  The next morning I was completely walking on my own, and pretty much back to my joyful personality.  I admit that, to this day, I cannot bend my body, sit, or pick anything up.  But other than that, I am - and have been for days - me again!  Oh, and I ditched the pain meds 4 days after surgery!

So, before I reveal the results from this surgery, let me take you through a quick pictoral tour of where we've been...

May, 2010... just after I was born

April, 2012... after 6 surgeries and 3 expansions

September, 2012...
just before surgery #8 with three full expanders                                             

October 5, 2012... after surgery #8!

                                       

And I am done with surgery for 2012!!! We know that 2013 will bring us some surprises in the way of surgery; I will actually undergo as many as 4 surgeries next year.  And we are praying that next year will be my year -- that I will become nevus free.  This has been a long haul, and to know there are still so many surgeries left is a little difficult to grasp.  But there is a method to all this madness.  And this process, after all of it's travels, troubles, and victories, deserves a happy ending. So we shall seek it.  Next year.