Friday, July 27, 2012

Trouble in the Midst?

Hmmm.  We've hit our first bump in the road, but it's presented us with a mystery.  I woke up yesterday, and mom could hear that I was fussy even before she entered my room.  When she picked me up, she immediately knew why -- I had a fever. 

Before I go any further, let me say that fever is something we want to avoid at all costs during expansion.  It could mean nothing, or it could mean everything.  I could simply be developing a teething fever, or I could be developing an expander infection.  I may need oral antibiotics, IV antibiotics, or emergency surgery.  Only time will tell, but fever is not an indication of anything good.

Of course, the first thing mom did after taking my temperature (which was only about 99.5 underarm at that point) was email Dr. Bauer, Susan and Mim.  Then we waited.  And waited.  Mom wanted to see what would happen without fever-reducing medications for a little while.  It seemed to be a good sign that the fever wasn't going up, and after about 2 hours she gave me some Tylenol, which promptly brought it down.  What's strange is that there were no other apparent problems.  My incisions still looked good, my expanders and ports were fine and not tender.  I didn't  have a cough, sore throat or runny nose.  My appetite was fine and I even got down and played a bit.  We just couldn't figure out what was going on. 

A little while later, Dr. Bauer got back to her and asked mom to take me in to the pediatrician so we could try to pinpoint the source of the fever.  However, the pediatrician was just as stumped as the rest of us.  Nothing wrong with the ears, nothing wrong in the mouth... no apparent problem.  Except that my fever had gone up to 101.4 before my Tylenol had worn off.  Hmmm.

So my pediatrician spoke with Dr. Bauer and they agreed to start antibiotics as a prophylactic measure to protect my expanders.  Honestly, when my fever was down, I was totally normal and happy.  Until bedtime, when I just couldn't sleep.  I spent the first several hours of bedtime waking and crying about every thirty minutes.  To say that is unusual for me is an understatement.  I'm a good sleeper, and I never wake up after going to bed until the next morning.  But when mom came in to give me another dose of antibiotic at 2 a.m., she still could not see anything else wrong with me.  My fever was still down from my bedtime dose of Motrin, and no other symptoms had presented.  Yes, this is a mystery.

We don't know what this means yet except that we will probably have to postpone my next injection.  That, of course, is the least of our concerns for now.  Even an unrelated virus could torpedo this process, so we have some growing concern.  Please pray that whatever is going on doesn't present me with too much trouble, and that it does not impact my expansion.  We will keep you posted.   

Wednesday, July 25, 2012

Couldn't Be Happier

Things are going great!  Really, about as good as we could hope for.  I am healing nicely, still.  My expanders look good.  I am happy and comfortable, although I'm still working out the physical kinks in adjusting to sitting and bending with my new leg expanders.  And we've done my first fill, which I might say was the best experience we've had to date!

Mom and dad prepped me as usual on Sunday for my injection.  When they began to put the lidocaine on, I got nervous and I let them know it!  At that point, they were a little concerned that I would go back to struggling and screaming for the procedure.  But I manned-up and when it came time to do it, I layed down on my belly, put a smile on my face, and played a game on mommy's iPhone while they did the deed.  No tears, no fuss, no muss. 

As instructed, they started slow, and only filled one syringe per expander.  My back expander got 60cc and each leg expander got 30cc, so now I'm at 180, 80 and 80, respectively.

Still playing with mommy's phone.  I am so smart!

My bubbles after the fill.  You can see them starting to fill out now!

Me, in all my glory, and as cute as can be!
My expanders felt great after this fill and each of them easily could have handled more, so my next injection should go really well.  We look forward to finding out!

The only small issue we've encountered so far this round is that one of my ports (the one in the nevus) is very puffy. Take a look...

Dr. Bauer initially thought it was fluid build up, which would make sense because dad pulled my drains on Sunday as well and one of them (which was still draining nicely) was very close to this port.  So, we were instructed to prep for a fill, but to go in with an empty syringe and stop the needle between the skin and the top of the port to attempt to drain the area.  Getting the needle in this teeny tiny space was no easy feat, but dad did a good job.  Problem is, no fluid came out.  So Dr. B said to let it be for now.  There is a possibility that it's just puffy for no apparent reason.  He's seen it in a patient or two in the past, and as long as dad can still access the port for my fills, it shouldn't cause us any trouble.  And, it might just soften and flatten all on its own in time.   

So now we are half way through the week and excited to do my next fill.  We pray that things keep going smoothly and that this puffy port doesn't present any problems.  Keep checking back for more on my adventures!  

Wednesday, July 18, 2012

Let's Do This!

Tomorrow is one week post 7th surgery, and I am doing great!  My parents really weren't sure how this would go over now that I am getting older and becoming more aware of everything in this process.  But if you remember, I was stunning them with my pre-surgical strength and courage.  And today, they are even more in awe of me.  I am a champion. 

Admittedly, the immediate time post-surgery was not good.  I was in quite a bit of pain, upset, and angry, and for the first time the anesthesia was causing some nausea.  So the remainder of the day did not go over well.  We stayed the night in the hospital due to my upset tummy and the need to get my meds via IV since I couldn't take them orally.  But I was already sleeping pretty well by that night, and the next morning I started taking my regular over-the-counter pain  medications without trouble. 

Dr. Bauer came the next morning to change my dressings himself, and then we were on our merry way.  By the time we got into the car, I was feeling much more like myself, and when we got back to the hotel, boy was I ready to eat!  The improvements just kept coming after that.  Saturday was the last day I took pain medication.  Isn't that amazing?  I only took meds for three days!  By Sunday night, I was up and walking again.  And not just a little - I walked half a block!  Monday, I woke up happy, in a good mood, and ready to jump and climb!  Yes it's true -- mom and dad are already chasing me around again!

We are home now and I am feeling good.  I am still having a little physical trouble, but I will adjust in time.  It's hard for me to sit down, and I can't bend over yet.  My legs are sore and tender, which makes me walk a little funny too.  But I don't complain about it at all.  I go about my business, and our days are a lot like any other. 

I am sporting THREE new expanders, which is awesome because we only expected two when we left for Chicago last week.  There is a 350cc expander in each of my thighs (each filled with 50cc during surgery) and a 750cc expander on the right side of my back (filled with 120cc during surgery).  Two of the ports are in new locations, so that is another adjustment, but we are very happy with their placement because they should be super easy to access.  If I keep healing as expected, mom and dad will begin my injections on Sunday.

The expanders are difficult to detect at this point, but you can see small bulges.  Two of the ports are on the left side of my back, and one is in the nevus (it is pretty obvious).  You can also see the drain tubes here, but dad will remove those on Sunday.
Ready for a dressing change!
A fresh dressing and a big smile!  That's just how I roll these days.
You can see from my smile that my demeanor has changed dramatically from the last round of expansion.  I am older, wiser, and much more expansion-savvy!  Only time will tell how I actually handle the fills, but if this is any indication, they should be a piece of cake.  Knock on wood. 

So stick with me to see how we do on this 4th round of expansion.  If it goes well, there is a chance these are my last expanders.  We won't get ahead of ourselves, however.  There are too many variables which can change that expectation, so it is more of a hopeful outcome.  For now, we are thankful that surgery went well, recovery is going great, and the healing process is doing what it should. We are praying that this round is infection-free, that the skin stretches well, and that we have no complications.  In 11 weeks, then we just might be able to really enjoy the thought that these could be my last expanders.  It's in God's hands, and we trust Him.

Thursday, July 12, 2012

The Plan

For the first time since my first surgery, I went to see Dr. Bauer in the office for a pre-op visit. Seeing that this is my 7th surgery, and we had originally planned on 4, and we know this will get us close but it won't be enough to get the whole enchilada, we thought it was good to talk about "the plan."

Dr. Bauer came to see me with an entourage of medical students and nurses. This was test #1 for me, though I didn't know it. My parents are always wary of how I will react to these situations, and as I get older, they don't know if it will get easier or harder. The fact that I've been going around for weeks telling them "no bubbles" while pointing at my leg has not been a good sign. But I passed the "office-visit test" with flying colors. Notwithstanding all of the people who packed into the room to watch Dr. Bauer poke around my naked bottom, I did not cry, I did not fuss, I did not get upset at all. I just hung out and played with mom's iPhone (yes, even at 2-years-old I know how to use this!) and waited for them to finish. Whew!

After my last surgery, Dr. Bauer had talked about expanding the legs only this time. So we were surprised (pleasantly, if you can believe it) that he said he would place 3 or 4 expanders! He is trying to make this my last round of expansion, and will place what will fit safely and still allow me to grow good quality skin. And if this expansion is succesful, the plan is to return for a final excision of any nevus Dr. B hasn't gotten (without expansion) and revision of scar tissue. So, ideally, "the plan" is 3 more surgeries (today included).

I went back for surgery about an hour ago; mom and dad sit patiently in the waiting room to discover what lies ahead for the next 12 weeks. And, they were able to breathe another sign of relief when I passed test #2 -- the "pre-op wait test." I ran into the hospital, goofing around without a care of where I was. When we got to the usual nurses station, I drew back a little, starting to figure it out. But that was it. I am a champion, and I have proved it once more. I didn't fuss, didn't cry, didn't even seem anxious.

So we will see how test #3 goes -- the "post-op test". They should find out anytime...