Monday, January 23, 2012

Still on Target

We haven't had a whole lot of excitement around here, which is why there has been a little delay on the updates.  The fills continued on as expected after the last post, until this past week.  There was nothing extraordinary going on, but I had a pretty bad cold, so the latest set of injections was postponed.  Until suddenly, the worst was over.  Just like that.  We got the go ahead today to continue the expansion, and voila, we are still on target and didn't even miss a fill.  How wonderful!

To sum up the past few weeks, the expanders have been filling as expected (based on our experience from month 1 of this round) -- the right side is doing great, and the left side is doing well too, although not as great as the right.  We really can't complain though.  Today, we completed fill #6, and I was even pretty calm for the entire process.  Finally, I caught on and it's just past halfway through this round. 

During today's fill, dad injected 40cc into my leg, 60 into my left back, and 80 into my right back.  Our totals are now ---- 280, 470 and 530!!!  Bearing in mind that we FINISHED the last round with 470cc and 505cc, and that we theoretically have 5 fills left in this round, we are doing fantastic!   Just check me out....

I know what you're thinking: those things are huge!  Yes, yes they are.  But we are proud of them!  And with God's grace, they will get much bigger.  Please keep those prayers coming.  We still have 5 weeks to go, and it's crunch time for keeping infection and sickness at bay.  Thank you all for the love -- I'm really feelin' it!

Tuesday, January 3, 2012

What's in a Fill?

We have completed one month of this expansion without complication... this is amazing in our world!  We did my third fill yesterday, and it went about the same as it did last week.  Dad got 60cc in my left back expander, 75 in my right back, and 45 in my leg.  We are actually 40-50% toward our goals of 350cc (leg) and 750cc (back) already, and are so grateful to the Lord for bringing us this far.  Mom got some great photos this week that really show off how big they're getting...

It dawned on us that with all the "fills" we have done over the last year, and written about, we have never shown you what we're actually doing.  So, here is a little Tissue Expander Injections 101:

Each expander (as you know, I have 3 in this round) is connected to a tube that is connected to a "port".  In surgery, the ports aren't necessarily placed next to the expander, but are placed in a spot that will provide easy access and comfort, if possible. 

An empty expander, the tubing and the port
In this round, the port for my right leg expander is above it, on my back and under my nevus (seems like and obvious spot), but the ports for both back expanders are all the way over in my left thigh.  So far, this has worked out for us (unlike last time where the thigh-placed ports were difficult to access because of the fatty tissue around them). 

On a weekly basis (or more often, if directed toward the end of an expansion), and only when I am not sick (even a cold can cause a delay), mom and dad inject saline into the port, which flows through the tube and fills the expander.  The amount that will go in is relatively predictable, but they have to be careful to check the expander throughout the fill by feeling how hard it is getting (you don't want it to become rock solid) and doing a "capillary refill" test, where they check that the color of my skin returns to pink within 3 seconds after they poke it with a finger.  Sounds pretty basic, doesn't it?

Having the supplies in order is the more complicated part of this process.  Dad does the "injecting" so he gets the supplies ready.  Here's a gander at what we use:

As you have probably read in the past, before we even get to this step, mom and dad put a lidocaine-based cream on my port sites and cover them with some sort of plastic for about an hour until it begins to work.  This helps me not to feel any pain when dad places the needle.  It works most of the time.

In the picture above, you see butterfly needles still in the package (top left corner), three 60 cc syringes and two 30 cc syringes (all already filled by dad), chloraprep packages (top right corner), alcohol swabs, and gauze.  Three of the syringes are already attached to a a needle (one for each port).  Dad fills one 60 and one 30 cc syringe for each back expander, in case there is still room when he finishes the first syringe.  He can change out the syringe without removing the needle, and continue the fill. 

When dad removes the plastic over the lidocaine, he wipes it with gauze, and then an alcohol swab.  The chloraprep looks like a large q-tip, and sterilizes the area.  Then he can insert the needle.  The extra needles are ready in case the one he attached to the syringe becomes contaminated.  This can happen as simply as the needle touching ANYTHING other than my skin.  It can also happen if the needle doesn't strike the correct area of the port and has to be inserted again.  A needle can never be used more than once.  This doesn't happen often, but occasionally the needle strikes the side of the port (especially if I'm struggling!).  After the needle is inserted, dad begins to push in the saline and then draws back a little to make sure it is working right (saline will flow back out if the needle has been inserted correctly).  If we are in business, dad continues to push until the expander tells us that it's had enough.  Then the needled comes out, a band-aid goes on, and I am a happy camper again. 

The idea of doing this at home due to having a surgeon who is out-of-state was extremely daunting and intimidating at first.  But we were assured by other nevus family friends that it wasn't that bad.  And, they were right.  It's not fun, by any means, but it is do-able, and we definitely do it.  Twenty-six times and counting...

Here's to hoping that the 8 remaining fills of this round are uneventful, successful, and complete.  Only two short months until we find out if I will be come nevus-free this spring!  Thank you for your continued thoughts, support and prayers.