This EB parenting gig is hard.
I just finished doing patchwork on wounds where mepitel had come off, or was too wet to leave on. This after bandaging her feet, but not before noticing that her toes were fusing together. And this after she complained that her feet (wounds) were stuck (to the bed/blanket) and we gently had to set them free.
Her nostrils are slowly closing too and the wounds on her fingers just keep reappearing. Her chronic wounds are over granulating again, because the wound care we’re currently using isn’t wicking away enough moisture from her skin, leaving the wounds (and bandage) wet, causing her to itch and scratch more than what she usually would. Mepitel is just not quite cutting it, and I’m currently at a cross road trying to figure out if it’s worthwhile buying Mepilex in South Africa if it’s easily available, though more expensive, and will arrive in a week or two, or buying it online and getting double of what we would in SA which means better wound care for a longer period of time, except that quantities are quite limited.
As the day draws to a close I realize6d I hadn’t yet given her her medication because I was so busy trying to get her to wash, rest and exercise, all before the sun goes down.
On days like today, I feel like I haven’t accomplished anything.
But have to remind myself that there was good in today. Our three hour bath had gone off smoothly, with no burning wounds or crying spells. I got to make wholesome meals, which my girls are from and got to give my butterfly and drone bee the emotional support they needed.
Eventhough a lot of the challenges we face are due to insufficient, ideal wound care, we know that all is not lost.
And though we see new wounds and blisters with every wash, and we know they could likely have been avoided, we soldier on knowing that our Rabb is watching over us and is paving the best way forward for our family, one painfully, exhausting moment at a time.
