Wednesday, February 9, 2011

To Treat or Not To Treat?

Ahhh, lab results.  We all anxiously await them, hoping for the best.  In my case, we were waiting for the results of my latest culture, and hoping for it to be negative.  However, I was not so lucky.  If you don't recall, my doctor took a sample for a culture when she took my stitches out last week.  We were hoping that once and for all the bacteria that caused the downfall of this expansion (Pseudomonas, pronounced sud-a-monas) would be gone.  It wasn't.

What does this mean?  The doctors believe it means the bacteria has "colonized" in my body.  It doesn't appear that I have an active infection right now, so the bacteria are basically just "hanging out" and not active.  Does it necessarily mean that they will become active?  No.  That is the good news.  Can we get rid of it?  No.  That is the bad news.

What we've just learned is that the bottom line is we can treat it, but it will not eradicate the bacteria completely.  At best, treatment will get rid of it temporarily.  As I grow older, my system will eventually eliminate it.  While this is not uncommon - most people have bacteria like this or another hanging out in their body - it is a big problem for me because it is difficult - and sometimes impossible - to go through expansion when older, and I can't simply "wait" for the bacteria to fade away.

Unfortunately, there are only 2 oral antibiotics that can help with this problem.  And they both have very dangerous side effects for babies and toddlers.  The alternative is to be admitted to the hospital and possibly begin a home regimen of IV antibiotics, which can last up to 6 weeks.  So this is a very difficult decision for mom and dad to make.  Treat?  Or do nothing but pray that the bacteria don't become active with my next surgeries?

At this point, we are leaning towards doing nothing.  The likelihood of getting rid of the bacteria entirely is low, so we don't see much of a point in putting me at risk for other health issues.  My doctors are still researching this issue, but it's pretty clear where I stand.  Dr. Bauer is not concerned that the bacteria will cause a problem with future surgeries, and boy we hope and pray he's right.  We will have all the information we need to make this decision in a week or two.  We'll keep ya posted...  

Thursday, February 3, 2011

A Time to Heal

Well I have successfully made it though my first "round" of expansion.  Yes, it was a heavily abbreviated round -- being only two weeks long (rather than 12 weeks) due to increasing complications.  But, in the end, I have experienced expander placement surgery and I did have part of my nevus removed.

Two days ago, my stitches came out, which was the final step in this process.  Everything went well, and I didn't have any pain in the procedure.  The only little problem that arose is that my skin separated at the incision for about an inch or so on one side.  The doctor steri-stripped it, and hopefully it will heal in a few days.  The real bugger about it all is that I REALLY REALLY want to get moving and mom and dad have to continue to "restrain" me until I heal.  That is not an easy feat.  The day ends up basically like this: held for a while, then play in the bouncer, in the pack-n-play, in the high chair, and in the activity center... and then we start over.  Once I'm given full reign of the house, there will be no stopping me!!

 Here are the latest photos...

So, now it's time that we sit back, relax, and wait for me to heal, both inside and out.  As of last week, my body was still harboring the bacteria that we think caused all the problems.  None of the 5 antibiotics that I took got rid of it, or so it seems.  Unfortunately, once I heal up, there won't be a way for us to check whether it is present.  So, we'll just have to cross our fingers and pray that we don't have this complication next time.  Currently, my next surgery is scheduled for May 10, just 5 days after my first birthday.  We won't know whether that is a firm date until we reach it; Dr. Bauer said I have to be entirely healthy for several weeks before surgery to avoid this problem again.  Please pray with us that we are able to continue on schedule and without complications.  We appreciate it.