HEALED!

Okay, Okay.  I know it's been over a month since I've posted.  Every week I figured, let's heal a little more and then post pictures.  But then the healing moved slowly.  So I decided today would be the perfect day for an update -- today I am 100% HEALED!

It's been 6 weeks and 3 days since my surgery.  Overall, the recovery started out rocky, but once we got the wound dressings under control, everything was good.  While it was a slow process, the multi-day dressings and creams became routine and weren't a big deal.  As of now, I need no more dressings and no more ACE wrap... until the next time.

So what took so long?  Well that "hole" I showed you in the last post got worse before it got better.  And actually, even a THIRD area began to open up before the healing really started.  Take a look...

March 13
The vertical stitches above the larger open area
have popped open here and the skin is
starting to separate upward now.

A week after that happened, I went in to have my stitches out.  Because of how difficult this task was last time, my parents and Dr. Price decided that it would be better to try to remove them under sedation, so we they actually did it in the O.R.  And it went MUCH better than last time!  Dr. Price put some "duoderm" (or as we like to call it, magic tape) over these open wounds, and presto, the tissue filled right in.  Although, it was a little over-zealous...

March 24
The bubbled tissue is granulation tissue
that grew a bit too exuberantly.

Well once this happened, Dr. Bauer gave us a new dressing routine, and we just had to wait it out.  All of the granulation tissue eventually calmed down, and scar tissue formed over it.  No need to worry, the scar tissue will be removed in a future surgery.

When mom unwrapped me today, the last of my scar tissue had formed.  I was finally done!  And thank God, because it's getting hot here in the Phoenix area and I can't take being wrapped in that ACE bandage anymore!  So here is the final result after Surgery #6...

I still have a bit of a road ahead of me, but am so very thankful for tremendous progress that we've made over the last 15 1/2 months.  And while we don't know when I will be done, we do know that my next round of expansion is scheduled to run from July 12 to October 4, 2012.  Please keep those prayers going.  We are really hoping this is my last set of expanders. 

And now it's time for a break.  A real break.  We are taking our very first family vacation next week.  Oh yeah, we've done plenty of traveling since I came along, but pretty much every trip has involved me being poked and prodded in some way.  This time, no doctors.  No hospitals.  No bandages.  Just family and fun.  And Mickey Mouse.

Holy Moly!

Oh what a week it's been!  We made it home from Chicago last Monday, just in the nick of time before my sister started getting sick (the same way I was sick while in the hospital).  Turns out I (probably) wasn't reacting to anesthesia or getting sick from any surgery-related problems, but we're pretty sure the stomach flu went through the family starting with me a few hours after surgery.  What horrible timing!  After about a week, I was finally over it and my stomach, at least, was feeling back to normal.

The rest of me, on the other hand, did not feel back to normal until this morning when mom and dad removed my drains.  They really bugged me this time, and whenever I tried to walk or sit on my bottom, it hurt.  So for the last 10 days, I have been laying around, entertained by my two favorite T.V. shows: Mickey Mouse  Clubhouse (of course!) and Baby Signing Time.  Needless to say, I had a boring week!  Mom and dad wouldn't say the same!

Ok, to get to the really interesting part of our week...  A few days ago, the incision at the center of my back, where the flaps all came together, began to split.  Now, we are no strangers to open tissue, or the wet-to-dry dressings needed three times a day to care for it.  This happened to me after my last removal -- well sort of.  In case you don't recall, my incision opened last time a half-inch or so, and was filled with some goop.  Mom and dad kept up the dressing routine needed to clear it out, and it healed over nice enough.  So when they saw the goop start to form this time, they knew what to do.  But, they weren't prepared for what would be under the goop.

As the days have gone on since this incision first opened, this gap seemed to be getting a little wider with each dressing change.  Last night, it actually looked pretty good.  Well, pretty icky, but still healthy.  This morning, though, it was much more shocking.  The gap had gotten bigger, and the skin at the edge appeared to lift away from my body.  It is probably a 2-4 square-inch gap at this point.  Yup, mom and dad were pretty freaked out.

Photos were sent to Dr. Bauer and then dad called immediately thereafter.  Imagine his surprise when Dr. Bauer said it looks "great" and that it is "healing nicely."  Yes, that was nice to hear, but it is almost unimaginable considering how horrific it looks to the rest of us.  He re-instructed on the dressing changes we need to do, and said it should look better in a couple of days.  Oh boy, we hope so!

Here's a gander at the situation we are dealing with.  Oh, and by the way, there are not one, but TWO spots where my incision has split...

 

It goes without saying that this is unsettling.  We trust Dr. Bauer and we know that it will heal, but we don't know when, or what other problems might pop up before that happens.  Please help us pray that this heals quickly, with little discomfort, and without infection.

Butt, not yet...

I am excited to share that I have made it through my 6th surgery!  We are again in our home away from home, Chicago, and I am working on this post from the warmth of my Highland Park Hospital room.  I probably don't have to tell you that this trip brought more anxiety, nervousness, and excitement than any before it.  Because I had such a successful expansion, the results were expected to be very good.  And they were.  But, not as good as we had hoped. 

When I was born, my parents knew right away that I would someday have something that almost no one else in the universe ever has -- an entirely new bottom!  Indeed, I cannot even venture to guess a circumstance other than this where someone would have their old butt cut out and a new one put in its place.  It's an interesting start to life, that's for sure.  Anyway, when we started the butt-making process 14 months ago, we had planned on two rounds of expansion to get me through this.  Then I had complications.  So a third round was planned.  And now it's done.  Butt, I am not (pun intended!).

Before I go any farther, I just want to say that we are far from discouraged.  Disappointed?  Sure, a little.  But more than anything, we are thankful.  Thankful that this amazing process of tissue expansion is working, albeit slowly and frustrating at times.  Thankful that God has placed me in the hands of the most skilled, talented, and caring surgeon available, Dr. Bauer.  Thankful that we have the means to travel to Chicago for these surgeries.  Thankful to those of you who have helped me along my journey, whether it be by prayer, words of encouragement, or fundraising.  Thankful for the results we have achieved thus far.  Of course, we were hoping this sixth surgery would be the last one, but it isn't and we just have to accept that and move on.  We will get there someday.

So I had an adventure after this surgery that I never experienced before.  I was actually doing better than any surgery in the past -- eating and smiling and playing with toys just a few hours after it.  And even though I was doing so well, we still decided to stay the night because my surgery had finished late in the day, and it was after 6:00 when we finally got to our hospital room.  Well it turned out to be a good thing that we were there! 

A little digression here -- when we first got the word that surgery was at 12:30, we weren't too happy.  It meant that I would go all morning without milk, and that was expected to be very difficult.  As it turned out, however, I handled the fasting very well, and it became necessary for us to stay in the hospital overnight, which we wouldn't have done if surgery had occurred earlier in the morning.  It just tells us that God puts us in position for what we need, and things will work out ok.  And this is something else we are so very thankful for -- that God led us to circumstances which kept me in the hospital overnight. 

Ok, so why was it so good that I was in the hospital?  Well we went to bed about 10:30, and everything was going fine.  But 2 hours later, I woke up vomiting.  Pretty much lost everything in my belly with that first one, actually.  But nonetheless, I was heaving about every 20 minutes for the next 4 hours!  Mom would like for me to point out, though, that I was a total champ about it and didn't cry once during those miserable hours.  I would just fall asleep on daddy's lap, then wake up, lean over my bucket, and go back to sleep when it was over.  At 4:30 am, the nurses had called Dr. Bauer and he ordered an anti-nausea shot for me.  By that time, I was so exhausted, I nearly slept through getting a shot!

The shot helped enough that I could sleep about an hour and a half then.  But I woke up heaving again.  At that point, I was so thirsty, I drank a full cup of water.  Oh, mom knew this was a bad idea.  But I was so thirsty!  Of course, that water didn't last in my tummy long.  So then I was limited to little sips of water.  By this time, I had gone 14 hours without pain meds!  They tried to give me some, but back out they came!  Ugh!  Well, by mid-morning, my temperature had risen to a low-grade fever, and I hadn't made a wet diaper in about 16 hours or so.

Well, you know what comes next -- an I.V.  As much as it hurt to have a new I.V. placed (we had removed the original one early because I never had a problem like this before), it was just what I needed.  I didn't throw up again!  And with the I.V., they were able to give me pain meds that worked!  Things totally perked up from there.  We stayed about 6 more hours, and then were happily sprung from the hospital! 

The next stop was Dr. Bauer's office to see Mim for a dressing change -- or The Big Reveal, as we like to call it.  The first dressing change is always mom and dad's first chance to see the results.  And rather than be upset about how much is left, we are happy with how far we've come.  Take a look...

Happy baby boy, 1-month-old, Giant Nevus intact

After Surgery #2, 8-months-old

After surgery #4, 15-months-old

Today, after surgery #6, 22-months-old

  

I hope you can appreciate all of this as much as we can.  It is truly amazing.  And with each chunk that Dr. Bauer removes, he also lessens my risk of developing melanoma.  Remember, he isn't just removing skin, he is scraping out all of the nevus cells under my skin that pose a risk to me -- or at least as many of them as he can find.  And this is why we do it. 

The plan from here?  Recover, for one.  Remove stitches, hopefully without too much trauma, secondly.  And then start again.  July 12.

We Did Good!

I am pleased to say that my expansions for this round are over!  No, there was not another fill done since the last post.  Dr. Bauer has instructed us to stop because of a little virus I'm dealing with (I'll get into that in a minute).  But one thing's for sure -- even with one missed fill, we did good!  My final numbers are: 750 right back expander, 655 left back expander and 410 in the leg.  Wow!  And one week from today, we will see just where that lands me. 

So, the virus.  Yes, I caught a little "something."  It showed up yesterday, just 8 days before my scheduled removal surgery, in the form of a fever.  Mom tried to control it by alternating Tylenol and Motrin, but by early afternoon, my temperature was rising despite the medications.  And then I threw up, so it was definitely time to see the doctor.  When we got there, my temp was reading 103! 

Dr. Miller - my awesome and amazing pediatrician - ran several tests, including strep, flu and RSV.  All were negative.  The cultures were sent out for formal testing, so it's possible one of them could still show up positive.  But, the likely case is that it's just a viral infection wearing me down.  We were very lucky because she could see some yucky stuff on my tonsils, so at least she could pinpoint the cause of the fever, and that saved us from worrying that it was an expander infection (and it possibly saved us a trip to the hospital for IV antibiotics). 

Tonsillitis.  That word had yet to enter my parents' vocabulary -- well, since they became parents at least.  Not the best time for this to show up, but the good news is that I appear to be on the mend.  The better news is that Dr. Bauer believes we can still go forward with surgery as scheduled on March 1.  I haven't broken out in a fever since I woke up this morning, and there was no throwing up today either.  So this has proven to be a very interesting week.  We are still praying that I continue to improve, and that surgery does proceed as scheduled.  Hopefully, my next post will be from snowy Chicago!    

It's Not Over Till It's Over

Today was my TENTH fill of this expansion and we hit the big one... my right back expander now contains 750cc!!  It's crazy, it's huge, and it's wonderful!  We are all really excited that we finally made the 750 mark.  My left back expander is trailing behind with 655cc, but that's still great.  And the leg -- would you believe it has 410?  No doubt about it, this expansion has gone pretty perfectly.  Praise the Lord!

That said, although we hoped for this to be the last round of expansion I would ever need, Dr. Bauer's response to today's photos included this key sentence... "Keep in mind that depending on its size it is quite possible it will be a partial excision."  Translated: this may not be my last set of expanders.

There are so many variables that can work together - or against each other - in my surgery next week, and until it is over, no one can guess what is going to happen.  From the beginning of this round, we prayed for it to be successful and infection-free, and those prayers have been answered.  God is taking care of me, and if what's in my best interest includes another round of expansion, we all accept that.  But we can still hope that's not the case, right?   It would be amazing if this next surgery is the last one I need to complete removal of my nevus. 

So, who wants to see what 750cc looks like????

Me in all my glory:
655cc left back, 750 right back and
410 in my leg!

Technically, we still have one more injection to do next Sunday, so these bubbles could get even bigger!  But we are skeptical about whether that will happen because my sister has a cold and we are waiting to see if I get it.  So, the next 11 days will be filled with prayers -- prayers that I don't get my sister's cold, that my surgery is on time and successful, and that my recovery goes well and the pain is manageable... to name a few of the things on our minds.  And I guess it's time to face the fact that we'll be leaving the 80 degree temperatures and heading back to the 30's, so we ought to pull out the coats and start packing too!  As always, we will keep you posted on the days leading up to the big moment.

# 9 and Still on Time!

We are in our 10th week of this round, and have completed nine fills on schedule!  It seems surreal that it has gone so well, though we are not putting the cart before the horse just yet.  There are still two weeks to go, and while we don't foresee getting the remaining 195 combined cc's injected in the last two fills,  we are still hopeful that we can get close.  Dr. Bauer, Mim and Susan all agree that my new skin is looking good.  I can't believe we will see what he is going to do with it so soon. 

Here's a little look at my big bubbles now.  I am certainly aware of their existence, though they don't slow me down one iota!

Tomorrow, I will go to my pre-op appointment, but we aren't expecting any problems.  Guess it's time to start packing... we leave in 16 days! 

Down to the Wire

We have just over three weeks to go in this potential last round of expansion.  Potential is the key word here.  When we started out this round, Dr. Bauer placed three exapnders to "give [me] the best chance at full removal" in this round.  And for the most part, this has been an uneventful and successful round so far.  We have not missed a fill to date.  We are extremely close to the fill goals.  But whether we make it is still questionable.

Last week, I began to develop another bruise on my right back expander.  If you don't recall, I developed a bruise on my right back expander about half way through the last round.  It wasn't the worst complication we could have had, but it did get bad enough that we had to stop fills on that side.  We made it to 505cc by the end.  These bruises are caused by the pressure the expander is placing on the tissue, and can damage it badly enough to result in tissue and skin loss.  So mom and dad have been watching all of my expanders with keen eyes to stay on top of any potential problems.  So far, the bruise I have developed this time is faint, and hasn't changed since they first noticed it several days ago.  Dr. Bauer is allowing us to continue the fills in that expander, but we do have to take it down a notch when we do so.

Today, we completed my 8th fill of this round, and we hit a milestone... my 350cc leg expander is now filled with 350cc of saline!  We did it!  Out of the 7 expanders I have had so far, this is the first that has made it's goal.  And we won't stop there -- Dr. Bauer says to keep it going with the last few fills we do, so it will actually surpass our expectations.  I have to say, this is a really strange expander to work with.  My leg is so tiny, and the expander is so big now.  Mom and dad even had to go out and buy me new pajamas today because my other ones (which were already a size big) can't fit over my leg bubble!  But we do this with one achievement in mind, and we can't wait to see what success is reached in my next surgery.  It will all be worth it; we know this for sure.

As for my back expanders, I already mentioned that we have to take it easy on the right, so dad only put in 40cc today.  The left back is getting difficult to fill, and he had to stop at 45.  We have a feeling the next few fills will be minimal, and that getting to the goal of 750cc in the back expanders is going to be tough.  They are now at 575 (left) and 630 (right).

All in all, we are very close, and truly happy with the way this round has gone so far.  Dr. Bauer may recommend that we start doing fills more than once a week at this point to make sure we get the expanders as full as possible.  We really need each of the last three fills, at a minimum, to give me the best chance at completing removal of my nevus with surgery #6.   Please help us pray that I don't get sick between now and surgery so that we don't miss any of my injections, and that we meet the goals of 750cc in my back expanders. 

That said, we are prepared for the possibility that God may have another plan laid out for us, and that we just won't be able to achieve full removal with this round.  There is no way to know until the surgery happens.  But we are going to give it our all until then.  And if I need another round of expansion, so be it.  We know that He is watching over me, and Dr. Bauer, and we accept this journey for what it is.  But we still pray for success and good health and that I remain infection-free, and are grateful for these such gifts that He has given us thus far.