These past five months have probably been the easiest, most difficult experience with Epidermolysis Bullosa. My daughter’s face has been filled with scabs for the longest time, and whilst scabbing isn’t necessarily a bad thing, in her case… well… her scabbing wasn’t normal.
With her scabbing, or crusting as the doctor put it, there was always pus. Sometimes more, sometimes less, but the fact is, it was almost always there. And although knowing pus indicates to infection, it dawned on me just recently that the formation of her scabs wasn’t normal either. I pride myself on being observant, especially with those dearest to me, so this realisation really hit me hard. My daughter, who shared everything from my DNA to my food, who lived and breathed almost her entire life to date in my presence, was overlooked. An importance aspect of her healing process was overlooked. Maybe it’s because I’m too laid back a mom, or perhaps it’s because she’s had similar looking scabs, minus the pus, before, or perhaps it’s just the fact that her wound would heal beautifully, until she scratches resulting in pus filled scabs once more. Or maybe, just maybe, I overlooked them because I didn’t want to face the truth. I don’t know. With Epidermolysis Bullosa, there’s a lot you don’t know. You hope and you pray that your next check-up will have positive results and that your little babe won’t have to be admitted. You hope and pray that the doctor (derm actually) is pleased with your little one’s blister progress and sends you home with a follow-up appointment 3-6 months later. But hoping and praying is not enough. You must do!
So as I sit here lamenting that I hadn’t done more to treat the wounds on my little girl’s face. I sit here, on edge, listening attentively for any peep or sigh coming from the room next door, because more than anything, I want to be there when my little girl wakes up. I want to be when she wakes up and reaches out to pull on her bandages (and potentially pulling off some skin from her face). I was to be there so that I can gaze at her beautiful face, all wrapped up in bandages. My goal for the day is to see my baby’s eyes as she stares up at me and smiles. My little, teething, ten month old is wrapped in bandages with only her eyes, chin and a fraction of her cheeks open and yet still manages to gaze at her momma with love, even though I’m the one that placed the bandages there in the first place. It pains me to see my little girl bandaged up like this. And yet… knowing that this manner of wrapping her isn’t the ideal, pains me even more. Her bandages have shifted since we first put them on, and so too has her mepitel, leaving the affected area exposed at times, and allowing the bandage to stick to her skin, and then harden, making bandage removal an enormous challenge. The ideal would be to wrap her entire face, only leaving slits for her eyes, nose and mouth, but after the long hospital visit we had yesterday, this was the best I could muster. As I sit here, I’m considering whether or not I should do a bandage change on her face, or just allow the already hardened, blood soaked bandages to continue working as it has, even though its current state won’t allow for maximum benefit. Instinct is pushing me to go ahead and change it, but common sense is asking me to wait for my husband to return from work. Already, a delicate change of this nature takes two, well-rested, sane individuals at least fifteen minutes to complete, Lord Alone knows how long it’ll take an exhausted momma, who had spent the evening on high alert waking up to her butterfly’s every peep, worried that she may tug on her bandages and pull off her skin with it.
But I am grateful. Over the past few months, her body has gone from being almost filled with blisters, to what it is now; an approximate 9x8cm area when all the affected areas are combined. That alone is an achievement, but one that is sometimes short lived.
With EB, you never truly breathe a sigh of relief, for just as your last blister is about to heal, another one appears. Just last week, I was in a situation such as this; my daughter’s last blister had almost healed, and I was eagerly awaiting the moment I could finally proclaim “She doesn’t have a single new blister!”, but alas, two days later we accidently stumbled across a new blister, 6cm long. But, we cannot complain. God, in His Infinite Wisdom and Mercy, has only gifted us with that which we can bare, and so we praise Him in all conditions.
الحمد لله على كل حال