Tuesday, April 16, 2013

Proceeding with Caution

The first few weeks of this expansion have been interesting.  For now, things are on track.  However, we hit a bump in the road right before we had planned my first injection, 2 1/2 weeks ago. Generally, by day 10 post-op, my incisions should appear to be stable and healed.  My drains can be removed and I can be bathed.  And we can proceed with the injection.   This round, we did not meet these milestones as scheduled.

Mom and dad removed my drains a day early, which was nice.  Unfortunately, at that time, mom noticed that my right incision looked a little unusual.  The left, however, looked just as it should, and was healing nicely.  She talked to Dr. Bauer and watched it a few days.  And, being cautious, they postponed the first injection.  Four days later, when the incision had not yet healed, Dr. Bauer decided I should have a round of Cipro, an extremely hefty antibiotic that is the one and only oral that can target the bacteria I have had issues with (Pseudomonas... oh how we hate to spar with that stuff!).  While it was not ideal for me to take this antibiotic (it is not super-safe for kids of any age and has some very serious risks), Dr. Bauer thought that one week of the stuff would be safe and could really help.  Which it did.

Within about 36 hours, there was a very noticeable improvement in my right incision.  What does this mean?  We don't know for sure, but it seems very likely that the Pseudomonas was preventing the incision from healing, even though it had not yet activated an infection.  After a week, the incision was looking really good.  And today, it is fully healed.  We pray it remains healed and that the Cipro did its job well enough that the bacteria remains at bay for the remainder of my expansion.

The good news is that although we missed my first scheduled injection, we have definitely made up for the missed volume in the two we have done since then.  When we started, we took it easy, but dad was still able to push 60cc into each expander!  And the following week, dad pushed 90cc into my left expander and another 60 into my right.  To put this in perspective, my expanders are each 500cc-sized. So, after only two injections, one of them is HALF full (the left is at 250) and the other trails that just a little (the right is at 210)!  This is excellent progress!  We acknowledge that these numbers are a bit inflated because the missed week, followed by the "easy" week, probably left some extra room for catching up.  We don't expect such great numbers in the next injection, if it proceeds as scheduled.  But we are very happy with the numbers as they are now.

An old pro!  Perfectly happy as dad does my injection.

After the first injection - left at 160cc and right at 150cc
And now... left at 250cc and right at 210cc

Mom and dad continue to watch my incisions very closely, and are treating them with aquaphor on a daily basis.  As long as they remain stable, we will fly back 8 weeks from today to have my expanders removed.  Which means we will hopefully get 8 more injections in as well.  While we are happy with the progress despite a few roadblocks in this round already, we definitely proceed with caution, and don't take the achievements for granted.  Please pray that I remain infection-free and complication-free for the remainder of this round.  Every day, I am another step closer to closing this chapter of my journey.  We are hopeful that will come this year.    

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