Friday, May 27, 2011

Lights, Camera, Action!

The next big day in this adventure had finally arrived... it was time for my first fill!  Technically, we could have done it a week prior, but I caught a cold and we had to wait it out. 

As it turned out, doing the fill itself really wasn't that difficult.  But we found three big challenges in this process: getting the lidocaine wrapped properly so that I will numb up, keeping all of the necessary supplies sterile, and keeping me still! 

The "fun" started when dad got home from work last night.  Mom had the lidocaine, saran wrap, and two small ace bandages ready.  It seemed like a good idea at least.  On went a blob of lidocaine, a small piece of plastic, and then the bandage.  But within seconds, it slipped and down went the lidocaine.  So they tried it with a larger piece of plastic and no bandage.  That didn't work either.  After about 15 minutes of putting on a glob and wiping it off because nothing seemed to stay in place, they just wrapped me with several layers of saran wrap and stuck me in the high chair.  We will have to come up with a better method next week!

The lidocaine has to stay on for an hour, so it was a good time to have dinner.  But after sitting in the high chair for a half hour, I was ready to move!  Problem is, the makeshift wrap had to stay in place, so I couldn't get going.  Ideally, the cream would numb up the port so I don't feel the needle during the fill.  And to make things even more difficult, the port moves around a little as I do, so I had to be pretty still.  Now, for a little guy like me, being still is NOT on my list of things to do.  So, when the hour was up and it was time to get started, I was already pretty cranky.

While mom, sis, and my nana tried to entertain me as I was stuck in the high chair, dad got the supplies ready: one bag of saline, 2 60 cc syringes (next week we'll fill 2 60's and 2 30's), 3 butterfly needles (one for each syringe plus an extra just in case one of them gets contaminated), suture scissors, gauze, chloraprep, alcohol swabs, and sanitizer.  It was a weird sight -- it looked like a doctor's tray on the kitchen table!

The first little challenge appeared in simply getting the supplies ready.  The first bag of saline wouldn't fill into the syringe.  It was wired, and likely a rare complication.  But out went that bag and dad went off to get a new one.  He filled both syringes, attached a needle to each, and tapped out the excess air.  Everything was ready.

Being the first time we did this, it wasn't easy to figure out a good position for me to be in when we start.  With the ports being in my outer upper thighs, they are more or less visible depending on how I sit, stand, or lay.  We started out with me on my side - a position I have never been in - because it was the clearest view for dad.  Well you can imagine how that worked out.  Then we tried it with me sitting.  No go.  What seemed to work best was for mom to hold me face to face so that she could have a grip on me and dad could manipulate the port. 

As we tried to figure out what worked best, a needle got contaminated because it was set down on the table so we had to take a break and switch it out.  Then the replacement accidentally retracted so we had to again switch it out!  Then it was time.  Dad wiped off the lidocaine with gauze, swabbed my leg with alcohol, and then again with chloraprep to sterilize.  Next, mom held me still and dad went in.... but hit the wrong place.  Now, this really wasn't dad's fault - I was extremely squirmy and the ports aren't all that obvious.  But, to top it off, mom and dad aren't sure if I was fully numbed on that side thanks to the lidocaine slipping around!  So they had to again switch out the needle, re-sterilize my leg, and stick me again where I might have been feeling it.  Not. Fun.

The next few minutes went just fine, and 45 cc went in easily.  The left side felt pretty firm at that point so we decided to stop.  45 was good.  We repeated all the steps above for the right side, and things went much better, including the amount that went in - the whole 60 cc.  Dad thought there was room for a little more, but Mim and Susan warned us not to be too forceful with the first fill and to try for 40-60 in each.  So, ultimately, the first fill was a total success!

We definitely learned a lot and have some good tips for when we do it again next week.  We were very grateful that my nana was here to help because we really needed a third person to entertain me.  I just don't like to be restrained - which is understandable - but that made the process very difficult.  When it was over and I could get down and run around again, you'd never know what we just did.  I was my happy self, walking around as quickly as I could move my feet.  Mom and dad are unbelievably thankful that I have responded so well to this round.

Here I am with 125 cc in my left side and 140 cc in my right.  The goal by August 4 is 700!

So, one fill is down, and we have (hopefully) at least 9 more to go.  I can't believe it - only 9 1/2 more weeks before we head back to Chicago and see what Dr. B can do with my new skin.  Yes, this treatment is taxing - physically and emotionally - on all of us, but the light at the end of the tunnel proves it worthwhile.

Friday, May 20, 2011

Home and Happy

We made it home late Monday night, after one more check-in at Dr. Bauer's office.  They sent us home, assuring us that the healing process was going fine and we had nothing to worry about.  I am now 11 days post-op, and they seem to be right. 

It was easy to adjust to being home.  I am perfectly happy, and back to routine for the most part - the exception being my appetite. I am at full mobility and am walking even more than I was before surgery.  It's easy because I am unaware of my new bodily extensions.  And, since daddy removed my drains Wednesday evening - one day early because one of the needles broke off - I've been much more comfortable.

Unfortunately, things never go according to plan in this game, and it looks like we're going to miss my first fill this weekend.  My sister caught a mild cold the other day and it has passed to me.  You'd hardly know it - I don't feel sick and don't look sick.  But once in a while my nose runs and I sound congested, and that is enough to cause a postponement.  So we'll wait for me to clear up and maybe give it a shot during the upcoming week.  Until then, I'll hang tight with the 80 cc Dr. B sent me home with.

80 cc. We should increase to
600-700 before the next surgery.
The only other cause for concern - though Dr. B is not concerned - is the appearance of my stitches in some areas.  They seem to be receding into the skin, which worries mom because that happened last time when I became infected, and the incision opened up repeatedly until the expanders were taken out only 15 days into the three-month procedure.  But there are currently no other signs of infection, and the incision seems to be stable, so the extra few days we have to wait to begin my fills isn't entirely a loss.  It gives me a little extra time to heal, and we're happy to take it slow.  Please help us pray that the healing continues, the incision remains stable, and that we can begin my fills very soon. 

Toward the bottom of this set of stitches, you
can see that they have "sunk" into the skin. 
Dr. B says it is probably due to swelling,
and not cause for alarm.

Tuesday, May 17, 2011

It's Good to Have Friends

One thing that this nevus world isn't lacking is good people.  We have made so many friends, literally from around the globe, over the last twelve months.  While we've been faced with a difficult situation, this aspect of it has been a true blessing.

On our latest trip to Chicago, we were lucky to spend time with some of these friends - some old and some new.  I have mentioned my friend Sully Nagel, from South Dakota, to you in the past - he is my nevus mentor and his mommy is the same for mine.  Because of what happened with my last round, my surgery schedule was thrown off track, but it put me on track with Sully.  We both had expanders placed on the same day, and our removal is on the same day as well!

We got to visit with the Nagel Family the night before surgery, spend time with them in the hospital, and also have dinner the day after surgery.  These are some of the most wonderful people on this planet, and it is purely awesome to have others along side of us on this adventure.

My good buddy, and idol, Sully

The two of us, getting to know each other

Sully getting a gander at my birthmark -
it's the first one he's really seen
and he was mesmerized!
Before we went home, we were also able to meet a new family, the Rigby's from Alabama.  Their little girl, Sophia, is 2 and just had her first excision.  We met for lunch, and had a great time getting to know each other. 

Beautiful little Sophie,
doing great after her surgery!

Thank you, nevus family, for being there for us.  We enjoy meeting each and every one of you.

Sunday, May 15, 2011

It's Looking Good

Chicago, known to some as the Second City, will now be known our family as the city that gave me a second chance.  We arrived on Monday afternoon, just about 16 hours before I reported back to Highland Park Hospital for a double surgery.  Dr. Bauer met us bright-eyed and ready to go at about 6:50 Tuesday morning, and again emphasized that he did not expect the same complications we had the first time around.  A few minutes later, we met the ENT, who agreed that we were making the right move by having tubes placed to help protect the expansion process.  At 7:30 a.m - prompt as always - the nurses took me back.

Little Superhero, decked-out
and ready for surgery

Ok, I might not actually be able to fly, but I will ace this surgery with flying colors!

Let's GO!
After surgery began, daddy went back to the hotel to wait for my sis to wake up (a family friend had graciously stayed with her while they brought me to the hospital), and mommy went to the waiting room.  A couple of hours passed, and Dr. Bauer came out to report that surgery had gone fine.  The ENT placed the tubes without incident, while Dr. Bauer removed the little bit of scar tissue that developed after my infection, and placed two 500 cc expanders.  He said we should aim to fill each to about 700 cc.  We have a bit of a head start on this, as Dr. Bauer already filled each with 80 cc.  Also, at mom and dad's request, he adjusted the location of the ports from last time because they were previously in my bottom -- now that I am working on my walking skills, I tend to plop down on my tush and it didn't seem like a good idea to have the ports there.  The ports instead were placed closer to my thighs.   

You can't actually see the ports, but my thighs really bruised up from getting them in.

I was so happy to see my mom in the post-op area (the PACU), but she could see that I was very uncomfortable.  As soon as she got me in her arms, I went to sleep, and pretty much stayed that way until the next morning - nearly 24 hours later.  Of course, I did have periods of waking during the day and night, but I was extremely fussy when awake.  Notwithstanding the painful cries, mom could tell that things were good because I took my bottles fervently, slept peacefully, accepted my meds without issue, and even held a toy or two.  And, of course, I smiled at my sis -- she always makes me feel better.  But because I did feel so uncomfortable, we decided to stay overnight, and I slept belly-to-belly with mom that first night, which helped my recovery along.

By the next morning, I was acting much more myself, even smiling and poppin' out a few giggles. We went home (you know, home sweet hotel) Wednesday morning, and I have steadily been getting better.  My cries became fewer and far between, I needed less pain meds, and I started to work on my mobility by Thursday. And believe it or not, even though I hadn't been able to crawl or stand up since Tuesday morning, by Friday evening I was back to walking again.  We had the first dressing change done at Dr. Bauer's office, and Mim said that my incisions "look better now than they ever did last time." 

In these two pictures,
you can see my new little bumps

The bottom line here is that we have hope... real, sustainable hope that I will continue to heal, that we will be able to expand, and that Dr. Bauer will remove my nevus. While we have been excited and ready to get back and try again, we have also been skeptical about the success of this re-do. But we followed Dr. Bauer's every recommendation and listened to his every opinion, and the road ahead is looking good.

I'll go in to Dr. B's office one last time on Monday before we head home, for another quick exam and some more reassurance that it is going well.  Mom and dad also need a little refresher course on how to do my expansions, since they didn't actually get to begin them last time.  So long as I heal up and don't develop an infection over the next week or so, we should be able to begin my expansions next weekend, which will continue weekly until we return for my August 4 excision surgery.  Thank you all for your continued support and prayers.  We see God's work first hand right here in this miracle.

Definitely feeling better.  It's magical
how different I feel after this surgery
as compared to that first one.


Thursday, May 5, 2011

Happy Birthday to Me!

It is May 5, 2011, and today I hit a milestone... a big ONE.  Get it???  Today is my First Birthday!

We had a very nice day, but being 6 weeks into "quarantine" and only 5 days from my third surgery, there was little we could do to celebrate.  Instead, we focus on all of the blessings that have been brought to us over the last year, and all of the other milestones that I have been working so hard to accomplish.  While the past 365 days have taken us places never planned for or dreamed of, we are grateful for the opportunities we've been given, the lovely friendships we've made (and would be incomplete without), and the wisdom and perspective that comes from living a life a little different than the standard grind.   

Although we've spent the last 6 weeks basically house-bound, I have definitely kept busy working on my developmental milestones, as I mentioned.  Yesterday, almost out of nowhere, I decided it was time to take my motor skills up a notch and start WALKING!  Ok, I'm not 100%, but I'd say I'm walking about half the time.  It's a proud, excited, and pretty wobbly walk, but my parents watch me in awe.  I have always been one of those kids who takes a new skill and masters it pretty quickly.  I only took my first steps about 3 weeks ago, and now mom had to run out and buy me shoes before our trip because I'll need them to run up and down the aisle on the airplane!  We're wondering how much farther I'll get over the next few days, and whether my new expanders will have any affect on this breakthrough skill.  Only time will tell, but as long as things go ok with my post-op healing, I'm betting nothing will get me down!

Now, trying to keep germ-free doesn't mean that we couldn't celebrate my big day.  I got to dig in to my very first birthday cake and opened a present that I'll be able to bring with us to Chicago.  The real festivities are being planned for later this month, when we'll have my par-tay.  But I had enough excitement to get me through until then...

Ok folks, I'm signing off now and will be back in touch after surgery next week.  We have come a long, long way since the last discombobulated attempt to begin this treatment, and are ready to get the show started.  We are praying for a safe trip, a successful surgery, and a complete recovery this time around (which will follow with a productive expansion).  Wish me luck!!