You’d think every bandage change is the same for an EB mom. Sure, every mom and child is different, and their wounds blister and heal differently, but you’d expect mom to know what to do – but not this mom. Not this time.
Until now, I’ve never really had to apply any mepitel or bandage to my daughter’s face. I guess the closest I’ve come to bandaging her face was placing a strip of mepitel on her forehead and between the eyes down to the nose, then wrapping the head close ensuring that the nose piece was secured at the eyes. Does that even make sense? Anyway, that’s the best way I can describe it for now.
But this bandage change was different. This time I had to secure three separate pieces of mepitel; one between her lip and nose, another to the right side of her nose up until just above the eyes, and the third to the left of her nose. Then too I had to do it in such a manner that the bandages wouldn’t obscure her vision and that her nostrils remain open so as to facilitate breathing and drinking (and breathing whilst drinking). To be honest, I had no clue how I was going to do it. But before bracing myself for that challenge, I had another challenge to endure; taking off the old bandages.
I cannot fully describe how exhaustingly challenging such a simple thing was. I mean, it’s just a bandage change right? Sure, my daughter’ skin is fragile, and her blood-soaked bandages had already dried and were sticking to her scabs and skin, but I mean, it’s still a bandage change? Or is it?
As I prepare to recount this morning’s face-bandage changing experience, my stomach is in knots and my heart is filled with trepidation. It’s as if my limbs are afraid to relive the intensity of that experience, and yet… it must be shared, for my sanity’s sake, if no other.
This process started with me cutting at the bandages around her head that were easy enough to reach, but far enough away from the wounded areas so that the bandage’s pressure wouldn’t hurt her too much. What would usually take less than half a minute to cut through, eventually took us a minute or two because my daughter’s instinct instructed her to move ‘that scissor’ away from her face at all costs. Using a scissor whilst your baby is trying to get to it is not the easiest of tasks in the world, but through the mercy of God, we eventually got it done. Next I had to cut away as much of the bandage as I could, lest the weight off the bandage pulls at the scabs or skin, and tears it off. What makes this more challenging (and scary) is that I had to positioning the scissors’ nose towards her face. This took a while longer, as I had to cut off enough so that the pressure on the remaining bandage was reduced considerably, but I also had to ensure that I left enough behind so that I had enough bandage to grip on when completing the final phase of removing her blood-soaked bandages. Imagine for a moment a mother having to hold down a screaming, kicking baby whose arms are flailing in every direction, whilst trying to cut away at the bandages on her face as little babe moves her head in all directions trying to evade ‘that scissors’.
Phase two eventually ended and I braced myself for the third and final stage. This was by far the most challenging part of the bandage removal stage as I was to hold down a wriggling, crying baby whilst cutting the bandage from her skin. I have a knot in my tummy just thinking about it now. Just minutes before, I had put her through a ‘don’t-touch-your-face-or-scratch-or-move’ kinda nappy change, and I doubt she’d forgiven me for that yet, and there I was placing her (and myself) in a very difficult situation. I was terrified, but it had to be done. So, placing my weight over her body (and praying that the pressure didn’t result in any new blisters), I slowly cut away at the bandages on her face, ensuring that I placed the scissors at the very spot where her bandage and skin meet, and with every cut I prayed that it was indeed the bandage I was cutting off and not her skin.
I know many people would probably be furious reading this knowing that I take such great risks with my daughter’s life, but in all honesty, this has been the most effective method to date. Be that as it may, I breathed a huge sigh of relief when that ordeal was over, then took a breath of courage and started with the next leg – rewrapping.
Rewrapping, though not as dangerous, was more difficult to do. By this time, my little babe had had enough and made no attempt at hiding her displeasure. She kicked and screamed, and shook her head from side to side whilst wildly flailing her arms in the air. We endured an hour and ten minutes of bandage wrapping woes before it all ended, and watched as my daughter almost slumped back from exhaustion. And just a I was about to follow suit, I realised… I wasn’t quite done yet! I still had to cut away from the bandages obscuring her vision. This was most certainly the most difficult and nerve-wrecking part of all, because one wrong move could rob her of her sight forever.
By the Mercy of God, this ordeal eventually ended, and we lay back, exhausted. And whilst my little one suckled to her heart’s content, a verse of Quran kept ringing in my head: “And seek assistance through patience and prayer”, “And seek assistance through patience and prayer”, “And seek assistance through patience and prayer”. This verse had first come to mind when,in a moment of weakness, I asked myself “How am I going to do this?”. The reminder was so well-timed and so great that I’d just sat motionless for a moment, trying to absorb it’s magnitude. Hours later, I was still mulling over this magnitude of this verse, when I realised: this was only a part of the verse. The verse continues and says “And surely it is difficult, except upon those who are humble (before God) [ie. those who submit themselves to God].”
Awestruck, I laid down next to my daughter and let the reality of it’s meaning sink in.