Monday, January 24, 2011

The Ups and Downs of Recovery

Oh, where do I start?  When I left you last, everything was going great.  I was feeling good, notwithstanding it was the day of my second - "emergency" - surgery.  I continued to feel really good through the next day... and then it was back -- my fever.  The Sunday following my surgery, I woke up with a temp.  And because I was taking an antibiotic that we've since decided I have an intolerance for, I was throwing up every bit of fever reducer I was given.  So, the heat went up, and my mood went down.  We stayed in that day -- and trust me, you don't want to know how they finally got my fever to come down for the night.

The next day was our last day in Chicago - at least for the time being.  The fever continued, and we went to Dr. Bauer's office to be checked out one last time.  Dr. B had an ENT next door to his office check my ears to make sure it wasn't an ear infection causing my fever.  It wasn't.  So, what was it?  Well, we don't really know.  The "guess" is that the bacteria causing the infection that torpedoed my expansion was still hanging around, and my body was reacting to it.  They gave me a new antibiotic, which does not upset my tummy, and by Tuesday, the fever began to go away.

With luck, we made it home late Monday night.  It's funny -- both times we left Chicago in the last 2 weeks, there was a snowstorm.  But we weren't delayed and happily slept in our own beds that night.  Things seemed to be going well, and we enjoyed a few days before I developed a horrible congested cough.  It sounded just like one we heard on the plane.  Hmmm, wonder where I got it?!?!?!

So, things were going well surgery-wise, right?  Yes, until.... they weren't again.  Starting Thursday, the stitches on the side that had the initial infection began to go downhill.  It was bleeding a little.  Then it started to get red.  And more red.  And today, began to ooze the same stuff that was there with the last infection.  Or at least that's what it looks like.  Which, of course, means infection could very well be on its way.  Luckily, when we discovered the goopy stuff, we were at the doctor's office and she grabbed a culture of it, so we'll be able to see what's bugging my stitches.  Dr. B thinks it's probably the same bacteria that's been there all along, and assures us I will heal, but it may not be before my skin tears again.  We'll just have to wait and see.  And I won't get to ditch my surgical dressings as we were hoping.  But oh well, it could be worse.  I just hope and pray it doesn't get worse.  Our big question is, if that bacteria is still there, what are the 6 different antibiotics I've been on for the last 6 straight weeks doing???

The good news is that they still don't think this means anything bad where our future surgeries are concerned.  And, my drains were pulled today so I am tube-free!  Oh, the freedom!  Normally, that would mean that I could begin to get back to regular activity, but with the latest potential infection, I'll have to keep still a while longer.  But I assure you, within a week of being able to move again, I will be crawling.  I am SO READY!

So, we are supposed to see Dr. Price next week and get rid of the 100+ stitches that cover me waist to waist.  I'm not real sure if that's actually going to happen now, but as soon as it does, we'll update with new photos.  Stay tuned...

Friday, January 14, 2011

So This is How It's Supposed to Be!

Well here we are, back in Chicago.  It is so cold outside, as compared to the 70-degree weather we were enjoying yesterday afternoon, and the snow that was falling when we left this city just 72 hours ago still lays thickly on the ground.  Our flight landed around 10:30 last night, and we arrived at our hotel at midnight, just 6 hours before I had to check back into the hospital.

Are we really doing this???
The pre-surgical procedures were no surprise to us, having gone through them just 2 weeks ago.  At 7:30 a.m., the nurses again whisked me away, this time to UNdo what we had done in that previous surgery.  By about 9:00, surgery was complete.

Mom and dad came right back to see me, and in an instant, they could see that something was different.  Different from when they came to see me after my first surgery.  My stats were good, I was not entirely swollen from IV fluids, and, most importantly, I was not crying.

We spent an hour in the recovery room, during most of which time I slept.  When we moved into our post-recovery room, it became strikingly obvious that something had gone wrong with my last procedure that did not go wrong this time. It didn't take long after I woke up for my first smile to appear.  When they gave me a toy, I played with interest.  I took my bottle when they offered it.  And while I did emit the occasional cry, which is to be expected, it was clear that I was nowhere near as uncomfortable as I was last time. I just felt good - or at least as good as one can feel after a dramatic surgical change to his body.

I was doing so well that we were able to leave the hospital by 1:30 p.m. - just 6 hours after surgery began!  I took a good nap right away, and when I woke up, I was almost entirely myself.  Even more than I have been over the last two weeks.  I laughed.  I smiled.  I talked and hugged and kissed.  I was playful.  I even tried to roll and move around.  I was me again.  And I was doing it with very little pain medication.  This is how it was supposed to be the first time around!

Just a few hours after surgery
Not only do we now see why I was so irritable and having trouble recovering for so long after my first surgery, this confirms Dr. Bauer's theory about what happened to defeat it.  I had some kind of infection that could not be detected in advance, and it put the kibosh on the entire first round of expansion.  We know that I had an infection, because they took cultures of the fluid coming from my incision.  We know that the bacteria they found is commonly associated with ear infections.  And we know I had a double ear infection just 2 weeks prior to that surgery.  It all makes sense.  The bacteria from the ear infections was still in my body, and it "infected" the expansion.

So what does this mean?  We pray that it means I will not have these complications when we try again.  But most importantly, it means that we can try again.
Ok, now for the best part.....
Even though we were barely able to expand, Dr. Bauer removed two very good size pieces of my nevus!!!!  Take a look for yourself.  Here's a "before" picture followed by one taken tonight.

The bottom line remains the same -- I will, most likely, need two full rounds of expansion (4 surgeries) to complete removal of my nevus.  We are hoping that we can try again in about 4 months, but will be extremely cautious and conscious of the bacteria that caused the downward spiral this time, and all dates from now on will be only tentative until we get to them  without an ear infection or other illness developing right before.  But we are doing our best to stay positive. And rather than call this a setback, we've decided to think of it as a sneak-peak that gave us a great head start.   

Thursday, January 13, 2011

Things Don't Always Go As Planned

Despite all odds caused by a snowstorm hitting Chicago on Tuesday, we managed to make it home with very little delay.  Just before we boarded the plane, mom noticed that I was leaking fluid through my incision, and left a message with the doctor.  By the time we got home, the doctor had responded to that message and a new antibiotic was waiting for me at our local pharmacy.

Everything seemed ok the rest of the evening; the leaking began to slow, and I was able to take my first bath in almost 2 weeks.  The following day (yesterday), mom went to change my dressing as usual.  But she found something very unusual.  There was now a hole clear through to the expander on the "problem" incision.

Photos were taken and sent over to Dr. Bauer's office.  Less than 24 hours after being home, we got the news: the expanders have to come out right away. 

Mom and dad spoke to Dr. Bauer late last night and discussed the problem and the plan.  Dr. B believes that some residual bacteria left from the double ear infection I had a couple of weeks before surgery infected the whole process.  He thinks we can try again in about 4 months with a "very slim" chance of this complication arising again.  Ultimately, he wanted us back right away for the new surgery.  He also said he should be able to get "a surprising amount" of nevus in this surgery.

So, we are flying back to Chicago tonight, less than 48 hours after being home.  Surgery will be tomorrow sometime; we'll get details as the day unfolds.  Please continue praying with us.  We definitely need the support now more than ever.

Monday, January 10, 2011

A Little Setback

Today was my big day -- or at least the big day we've been waiting for before we can come home.  It was Expansion Day!  Or so we thought.

Our last update was Thursday (today is Monday), and I had just gotten new stitches to repair the skin that split.  Well, we made it through the weekend with NO problems.  Everything looked great the last time mom and dad changed my dressing.  Then we went into the doctor's office.  As they unwrapped my dressing for (what we thought was) the last time, we found that my skin had split AGAIN!  In the same place.  Seriously?  It was perfect just 24 hours ago.

Now, for the really ironic part -- the OTHER side had a problem too; a totally random problem.  The expander on that side folded into a point right underneath my incision.  This caused a big, hard lump under the stitches, and put them in jeopardy of the same "splitting" that happened on the other side.

So, there was very little expanding today. 

We did get a great lesson about what we will be doing when I heal up, but until then, we will be a bit behind in expansion.  We also have to continue to change my dressing on a daily basis until my skin is healed. And my activity has to be significantly restricted until then as well - about another 2-3 weeks.  I think we're going to get a bit bored!

To give you an idea, when we get rolling, mom and dad will start slowly, but lead up to filling two 60cc syringes per side, and aiming to get at least 3/4 of that in on a good day (90cc).  Today, we got 10cc in the side that split, and 15cc in the other side.  But at least mom and dad got to see and experience everything with the medical team present, so they will be ready when they are on their own this weekend.  Ultimately, the goal is to have about 700cc of saline in each expander when we are finished.  Those are going to be big!  Now, we're not totally behind because Dr. B put 75cc in each side after surgery, so he gave us a bit of a head start.  We're close to 100cc in each, and have 11 more weeks to work on it.  They also said that if we get really behind, we  may be able to expand more than once a week toward the end.

Here are a few pics from today's appointment...

So excited to get these tubes out and start the expansion process!

This is an example of the port that's under my skin where we inject the saline, and the needle that we use to do that.

Just after the first expansion.  You can see my bubbles getting bigger.
Now, we did keep ourselves pretty busy over the weekend, doing a lot of fun stuff.  It snowed pretty good again, and my sissy finally got to go out and make her snow angel.  She loved being in the snow, and practically had to be drug in.  It's too bad there wasn't enough snow to make a snowman, but maybe we can do that on the next trip.  We also got a nice visit from grandpa, who drove down from Wisconsin, and I got to spend more time with my buddy Zac.

Snow-Angel Action

Loving the snow
I am super excited about something!

Sissy and grandpa coloring

A best friendship blooming
Ultimately, we are a little disappointed with where we stand before heading home, but we remember this is only the beginning.  A lot can happen over the next 3 months, and a lot can happen during my next expansion.  We'll just pray for the best and push forward, and remain thankful that I can even receive this treatment.  I am very lucky, and we will never take that for granted.

Thursday, January 6, 2011

One Week Post-Op

Oh, what a week it's been.  Complications?  Uh, yeah.  You know Murphy's Law, right?  Mom and dad sometimes think our last name should be Murphy.

We left the hospital last Friday afternoon.  Everything seemed ok, except that they wouldn't let me take any of the good drugs home with me!  The doc said all I needed was the OTC stuff, so that's what we had to go with.  Being on our own started out just fine.  Even though my incisions are in my back and on my bottom, I didn't have any problem getting into my carseat.  Dad cut some foam for it to make me more comfy, which worked out well.

Heading home from the hospital
I spent most of the day the way I spent the previous day and night -- sleeping in mom or dad's arms.  But then they noticed that I was getting warm.  Warmer.  Warmer.  By evening, my temp had reached 102.  Ugh!

Now, as I have said, I have the most fantastic doctor.  And he gave mom and dad his personal cell phone number to call if necessary.  So, of course, they did.  Doc wasn't too concerned.  He just said to manage it with Motrin, and he called in an antibiotic for me.  The fever did go away later that evening... temporarily.

In the end, I battled that fever for 4 days.  It would come and go, always going back up to about 102.  And of course, it made me feel terrible, which in turn made me a bit grumpy.  So, I didn't bounce back from surgery as quickly as expected. 

Being as uncomfortable as I was, I continued to spend my time being held, both day and night.  At one point over the weekend, I did try to lay in my own bed.  But that didn't work out.  Because of the drains coming from my wounds (which have to stay in 10 days post-op), the hospital said I'd have to wear arm-restraints in bed so I don't pull out the drains.  Well, me laying on my back (which I don't like), plus restraints on my arms (which I really don't like!), just didn't add up to a successful experiment.  So I ended up sleeping with mom every night for the first several nights.

 Sporting those darned arm restraints
A few days later, I did start to feel better.  I even started sitting up again.  Still couldn't roll, but at least I began gaining my independence back. 

Ahhh, you can start to see that spare tire

Yup, I am starting to smile and play again!
Just when things really started to look up, along came a little problem - that became a big problem - that became a little problem again.

Yesterday, when mom and dad went to change my dressing, they saw that it was bloody.  Uh-oh!  As it was unraveled, it became obvious that I had popped a couple of stitches, leaving two holes in my backside.

Immediately, they called the doctor's office. They were instructed to email over this picture so the doc could see what was going on.  He agreed it looked like some stitches had torn, gave instructions on wound care, and said not to worry.

Well, as mom and dad began to unravel the dressing again to clean the area (it was a few hours later), they saw that the dressing was bloody again.  Uh-oh became OH NO!  Now it appeared that more stitches had torn, and the skin had torn right along with them, leaving one big hole.

Another call to the doc - a direct one to his cell this time - left us with 1) instructions to get in to the office the following day (which was today) for a closer look and 2) a warning that the expansion may now be delayed.  Wonderful.

Ok, remember I said, the "big" problem became small again?  Well, it turned out that the stitches hadn't actually torn.  They were intact -- they were just underneath the top layer of skin.  What happened was that my nevus skin had torn along the incision, and the stitches just sunk down to the next level.  That nevus skin is so fragile; they're not kidding when they say that.

So, Dr. Bauer stitched me back up - which I did not enjoy at all - and said our expansion should be back on track.  We'll see on Monday... 

In the end, it wasn't a big deal. But it did take my discomfort level up a notch, at least for a little while.

Ahhh, now that I've gotten all the complaining off my chest, I want to share that this week certainly wasn't all bad.  First, and best, I got to spend time with some of my fellow nevus-owning friends.  I mentioned Sully (17-months-old) before.  He's my little buddy from South Dakota who had his fourth surgery the day I had my first.

Sully has really shown me, and others, the ropes on this adventure.  Well Sully and I got to get together with two of our other friends - Zac (Arizona, 8-months-old) and Brooklyn (Montana, 10-months-old).  Both Zac and Brooklyn had their first surgeries today, and both are doing well.  But before that, we all got to have some fun.  I can't tell you what a blessing these little guys (and gal) are to me - and to my family.  We really do love them all, and were so thankful to see them and share this experience with others going through it. 

My sissy and I have also had some fun this week.  Yesterday was her 3rd birthday, so we got to do some celebrating.  And it snowed today, which was fun to watch.  Sissy even got to go on a super-tall ferris wheel for the first time this afternoon.  Here are some pics from the fun stuff...

Catching a snowflake this morning

Ok, I'm not so happy to be bundled up, but I was still in a good mood, I promise!

Dad and sis are up there... somewhere.

Happy 3rd, sis!
All in all, we've had both our ups and downs this week.  But right now, we are feeling thankful that my recovery is going well, we are looking forward to completing my first expansion (and getting rid of these icky drains) in a few days, and we are so excited to go home next week.  Though, if the remaining 11 weeks of this expansion go as quickly as this last week did, we'll be back in Chicago before we can say "nevus"!