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.    

Perfection!

Many people strive for perfection of one thing or another.  It is rarely something "given" to you,  but instead something you have to earn with hard work, persistence, and dedication.  Perfection is hardly something I have mastered -- after all, I'm only 2!  However, today I can say it.  I can admire it.  I can relish in it.  And I can be grateful for it.  I have been blessed with perfection in a way I never dreamed possible.  In a situation in which I had no control.  I have just completed an entirely perfect round of expansion.

You may have been wondering where we've been and what we've been up to.  Well, the reason for my absence over the last few weeks is nothing more than that things have been going smoothly, and there really, truly was nothing to report.  We continued with my injections on schedule every week, even when I developed a slight cold.  Nothing has held us back this time, which is not just wonderful, it is amazing.  While I can't say it's unheard of, I can say that my parents, and the parents of my friends, enter a period of expansion with almost an expectation of complication because it seems complication is more the norm than the exception.  Case in point: I have 5 friends who recently began a period of tissue expansion, and 4 of them have already faced at least one complication.  Yes, I've had my own share of complications over the last three rounds of expansion.  And while there is mental preparation for problems, there is also hope that things can go smoothly.  But to actually achieve the things that we hope for -- to complete a round having done every fill, and having filled every expander more than its size -- is simply wondrous.  We couldn't be more grateful that God has blessed us with this gift.

My "bubbles" are, as I said above, OVER their capacity.  All of them!  It's just awesome.  My back expander (a 750) rests with 790cc, my left leg (a 350) has 445cc and my right leg (also a 350) has 385cc.  To say we've done good is an understatement.  We've done great!  But we were also lucky.  This is a process that is entirely out of our hands.  And to finish without having hard times to reflect on is almost surreal.  Again, we are so very thankful.

Take a look at how far I've come since my expanders went in July 12...   

July 18, before any injections

September 30, after 11 injections. 
Back expander at 790cc, left leg at 445cc and right leg at 385cc

 

"Stop taking my picture, mom!"

In less than 36 hours, we will be off to Chicago again, and I will face surgery #8 on Thursday.  While we have done the best we could possibly do with this expansion, the results to be yielded are still unknown.  We believe Dr. Bauer will be pleased with all of this beautiful skin he has to work with.  And we cannot wait to see what he does with it!

We are asking for a lot of prayers this week.  Not only am I facing more travel and another surgery, but many of my best buddies are facing their own troubles in their expansions.  Brayden, Aiden, Zac and even Sully have had some rough patches with their new expanders.  We hope and pray that they can all overcome their complications and return to Dr. Bauer with beautiful bubbles like the ones I am sporting.  Please pray with me.  For me.  For them.  For all of the beautiful nevus babies out there riding this roller coaster.      

You'd Be Surprised

Things continue to go well in my expansion.  We are all so thankful that it has been uneventful.  Really, we are just trying to go about our lives, for the most part, with a few hours on Sunday morning set aside for my injections. 

This gives us a lot of time to reflect.  When it's going smoothly like this, the process of tissue expansion appears to be easy, simple, and routine.  To some extent, that can be true.  But what's the hardest part of all of this?  You'd be surprised.

It would be easy to say that surgery is the hardest part.  It's true, surgery is rough.  It's rough on all of us.  And we will never be happy that I have had to endure so many surgeries, so much trauma, so much pain and emotional distress.  But I would venture to say that's not the hardest part.  Surgery comes, surgery goes.  I heal.  I get over it.  And then I kinda forget about it.

You might expect that wearing my bubbles for 12 weeks is the hardest part.  Nope, that's not it either.  Once I adjust to them, these big jugs just become a part of me.  They certainly don't hinder my activity level!  I run, I jump, I play, I climb... you get the picture.  I even learned to crawl and walk with expanders in last year.  I've just gotten used to them.  It's like they're not even there.  Oh, by the way, check them out after today's fill ---

My back is up to 550cc and my legs both have 255cc

It's true these can be a bit inconvenient.  Mom definitely has a hard time finding clothes that work with these things.  We have to make constant adjustments to the carseat, and have made changes to my bed and changing table too.  But that's all easy to do.

It used to be difficult completing the fills.  I would get so anxious, fearing the pain that lay ahead.  But luckily, the numbing cream works about 99% of the time and I don't really feel much.  So I've gotten over that too, and I've realized the process is no big deal.  So, the weekly, multiple injections are not the hardest part either.

It's not the lengths we go to protect my expanders -- the antibiotics I have to take when I get the slightest glimpse of a cold, the constant doctors appointments, the lotions and creams that get slathered on every day, or even the bandages I have to wear in the extreme Phoenix heat.  It's not the wound dressings we have to do three times a day for six weeks when my skin tears during recovery.  

Nope, it's none of that.
 
What's seems to be the worst is the impact this has had, and continues to have, on our everyday lives.  That part is not as visible as the rest.  Not as understood.  My family, once a group of social movers and shakers, has gone MIA since my surgeries began in December, 2010.  We have to lay low a lot of the time, losing contact with friends and passing on party invitations, playdates, and outings in places that are "too public."  Germs are feared in our lives more than in most peoples, because even the simplest cold could cause a delay of surgery, a missed injection, or even a serious infection that can completely torpedo a round of expansion (which I had the opportunity to experience myself).  When other kids get to go to Toy Town or The Children's Museum or even simply the play structure at McDonald's, I have to stay home.  Or worse, I have to watch my sister in her swimming lessons, standing outside the glass and not understanding why I can't "swim too."  Being excluded and missing out on childhood because something could damage my surgical plan -- that is the hardest part.       

But we manage.  We do this because we need to.  Because it is the right thing to do.  Because we are lucky enough to be able to, and literally have the best doctor in the world to do it.  And most of all, because it will give me a better life.  That, and that alone, makes the process tolerable.  And we will always be grateful for having done it.   

Half Way There!

This last fill was the half-way mark of this expansion!  We have been home for 6 weeks, and we leave for Chicago exactly 6 weeks from today.  My expanders, however, have surpassed the the half-way mark!!  My current totals are: 475cc in my back expander (which is a 750cc expander), 225cc in my left leg and 235cc in my right leg (both of which are 350cc expanders).  So if things continue as they have been going this round, I should return to Dr. Bauer with awesome volume and lots of great skin for him to use.  We pray every day that the second half of this round is as uneventful and smooth as the first.

Mom got some great shots this week...

I am all smiles while daddy fills my back expander!

A close up of the deed.

Playing on mommy's iPhone to keep me distracted!

Back is at 475cc, left leg is at 225cc and right leg is at 235cc

 

 
You can really see how the expanders are becoming an extension of my body.  The only little issue we're having is that the right leg expander has a couple of sharp points (you can see one of them in the above photo).  We are hoping it will fill out soon, because the stress could begin to break down the skin.  For now, mom and dad keep some foam tape over the points, which helps to disburse the pressure. 

Please pray with us that we are able to return to Chicago as scheduled on October 4 after an uneventful and infection-free round of expansion.  We never take for granted that it is going well, though we thank God for this blessing.  Complications can arise at any time, but we are hopeful that we won't see any this time.  Stay tuned... more to come!

Easy Does It

This round has been proceeding smoothly, which is always nice to say.  And while we don't take that for granted, we are taking the time to reflect on the last year and a half (plus a few months), and look at how far we've come.  And I don't mean in the nevus removal department.  It is truly amazing how "easy" this process seems to be to my family now that we've got so many rounds, so many surgeries, so many fills under our belts.

Because I have personally been doing so well this time, today mom got out the video camera for the first time during a fill.  You can see for yourselves how this is just a part of our lives that we have gotten used to...

In the end today, dad pushed 60cc into my back, 35cc into my left leg and 40cc into my right leg.  We might have been able to push a little more, but as I so plainly say above, easy does it.  There is no need to rush things along, especially when doing so can cause complications.  We are keeping things on track but also keeping them under the radar just a little to make sure they stay on track.  We are very happy with the volume after only 4 fills -- 415 in my back, 185 in my left leg and 200 in my right leg.

 

And while this does appear to be routine, and it is in our reality, we still pray every day that it remains an uneventufl, simple, and "easy" process whose end is in sight. 



Going Strong

I am about four weeks post-surgery and three fills into this expansion. So far, so good. My bubbles are growing nicely, and they have yet to bother me, although I am acutely aware of them. We were able to move my injection back to Sunday morning this past weekend so we can stay on schedule. The volume dad was able to push was amazing.  My back expander seems to be more flexible than ever before, taking another 85cc.  The legs are doing well too, with my left taking 40cc and my right taking 50cc.  We are still proceeding cautioiusly, but check me out...

Back expander with 355cc, left leg with 150cc and right leg with 160cc

 

You can see that the puffiness on that bottom port has gone down as well.  I guess we'll never know what was going on there.  But that's ok.  We are just happy things are going smoothly.  Of course, we don't take this for granted.  I still have 2 months to go, and we pray every day that the rest of this expansion goes just as well as the beginning.  Thank you all for your continued support and prayers.