Friday, July 26, 2013

Making Headway!


PTL his head is showing marked signs of improvement above and beyond the previous update I posted on Fulton's Carepages page.  To give you a brief summary, the doctors were amazed with his wound progress and asked what we were doing for it.  Calendula was the buzzword in the hospital for the rest of the day, and they are including it in their research and will be recommending it to other parents as well.  I love it!

I am posting some pictures because even though it still looks pretty gnarly in places, it all looks beautiful to me!  (Compare to this post here)

OK - this side is our present cross.  This was just beginning to rear its ugly head just a few weeks before discharge back in April.  The large spot is, of course, painful, and the open areas either are flat and bleed, or they bulge up and look gelatinous (think jellyfish bumps)  They can change between the 2 states within a 24 hour period.  When it bleeds, the most healing takes place.  When it stays bulged out, it usually gets worse.  If you see the areas behind the main wound, there are several darker spots.  These are spots that are healing and are basically closed, however they can reopen at any time.  We have to keep his hair closely trimmed here, as the hair gets in the way of keeping it clean and it irritates the wounds when they open.

This side has been a battle since his first skin grafts.  While the photo makes it actually look better than it really is in real life, it is still a marked difference between this and the post I put up a few months ago when I put out my cry for help.  (If you click on the Burn label, you can see the other updates on his progress)  The spots are tiny and scattered, and they open and close, grow and shrink almost on a daily basis.  But the last few days there has been a steady improvement.  Thank you Lord!

And this is my pride and joy shot!  The darker areas in that 5 inch strip going North to South on his head is a huge patch that was headed toward the way the first picture now looks.  Terrified he would have yet another large area to deal with, I took a huge leap of faith and started applying THIS product. (Never never never on the open wounds, though!) It is the Mom of 13's 4 Thieves Germ Away Hand Sanitizer, of all things.  And this is actually keeping his head wounds at bay.  Once these spots go bad, the larger ones never heal, so this breakthrough is truly a Godsend to Fulton.  (Please see update below)
Occasionally his hair will begin to clump in this area, which is the first stage before it begins to open up, but we just avoid putting the sanitizer on it (because it stings like crazy if it gets on an open area!) and scrub extra hard with the antifungal goat milk soap we are using to wash his head 2x a day.  Within 2 days, the spots give up and go dormant again.  But if we miss an application on this large patch, the whole area turns dark red and threatens to open up everywhere, so maintenance is very important.  I have been using this for almost a month now.  We will see how this goes!
Words cannot adequately describe how THRILLED I am with Wendy's hand sanitizer.  I suspect it is the rosemary and eucalyptus essential oils that are doing the trick.  I am studying up on these oils and seeing what else I can add to this, if anything.  He also has several patches all over the back of his head that we also have to keep a close eye on, but this is so much better than it has ever been before.
And so a special thank you goes out to Wendy Cukierski for creating such a wonderfully effective product.  I don't know why it works, since we still do not know what is causing this to begin with, and all labs come back as negative for fungal, viral and bacterial infections.  But it works.  And that is all I care about. 
UPDATE:  In my research I have found that some of the essential oils in the sanitizer should NOT be used on children.  I am so happy we found something to keep additional breakouts from happening, but we are relying on simple calendula preparations now and continue to be grateful to Our Lord for such a wonderful, effective, gentle herbal fix.  As I type this, his wounds have healed and only has small sores from time to time after surgeries, which we continue to treat with calendula salves.
I am honestly tearing up as I type this.  We are so exhausted with this whole thing.  And Fulton suffers most of all.  Please keep your prayers coming - you have no idea how much we covet them!