Thursday, February 23, 2012

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!    

Sunday, February 19, 2012

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.

Sunday, February 12, 2012

# 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! 

Sunday, February 5, 2012

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.