Sunday, March 11, 2012

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.

Saturday, March 3, 2012

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.