We've all dealt with "leaking fluids" -- cars leak fluid, airplanes do too (though we hope we aren't flying at the time!), diapers leak fluid, roofs in need of repair leak fluid, noses even leak fluid! But, generally speaking, heads and backs do not leak fluid -- unless you are a myelo kid. (Short for myelomeningocele, the official term of Jonathan's birth defect.)
This weekend had some challenges for us. The neurosurgeon seemed totally unphased; the parents were quite anxious. I guess it does bring a lot of peace of mind, though, when your surgeon is calm and declares that things are still progressing as expected! Both Jonathan's back and head started "leaking fluid" this weekend. First, his back was leaking where the scab started pulling away from the edges. (At this point, we will spare you the pictures that we've taken of his back.) The surgeon tells us that the leaking is superficial at this point, but it will slow down the healing process. This process seems to drag on, but we knew this would be a long haul. Jonathan's lesion was significant in size. We'll continue to take one day at a time.
So, today his head was leaking a little bit when I arrived. The incision just won't heal completely and fuse, so when the surgeon came by today he wanted to put in a couple of stitches to close it up. Mind you, I'm holding Jonathan on a pillow at this point. The surgeon just ordered the sutures right there on the spot, cleaned up, put on his "surgeon's gloves" and stitched Jonathan's head right there on my lap!! Yes, I did have to look away several times. Jonathan woke up long enough to cry and then fell right back asleep.
He is already much more tolerant of pain that I ever will be. And he will be such a tough little guy -- a real fighter! This is a whole new world, absolutely. You never know what each day will hold.
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