If you asked me two years ago, if it mattered what kind of wound care dressings we used on my daughter’s skin, I would likely have shrugged my shoulders and gone on with life.
Now, two year later, I would answer with an emphatic YES!.
When we ran out of wound care three months ago, I had no clue how we were going to get what we needed in the quantities we required. Prior to this, we’d been buying what we could of mepilex (the ideal wound care), and supplementing that with whatever mepitel we got from the hospital. But it wasn’t enough. As a mother, I would have to turn my face the other way, everytime I saw how the mepitel was affecting her skin. I’d alternate between mepitel and mepilex trusting that the Mepilex would ‘undo’ the harm of the Mepitel but just when her skin started improving, we had to swap over to mepitel again.
Up until about a year ago, Mepitel had been good for her skin, but then it started causing blisters and other challenges. And it isn’t just mepitel that causes blistering, any wound dressing that has ‘pores’ has the potential to cause blisters. The bigger the pores, the more likely the blisters I came to learn.
During the almost three month period that the hospital was out of mepitel, my family and I started experimenting with other kinds of dressings; vaseline gauze, vaseline on gauze, and a range of other silicone dressings which did her skin more harm than good. And it’s not that the Mepitel is bad, it’s just that it no longer agrees with her skin. Nothing with pores does.
So after about 3 months of trial and error, I reckon the type of dressing is of utmost importance. The thing with EB is that you never quite know what to expect. One day something works for your skin, and the next it’s causing you grief. And something what doesn’t work for you today, may work for you tomorrow. You just never know.
What I do know though, is that right now what we need we don’t have, not because it’s not available, but simply because it’s waaaaay too expensive to maintain.
What I do know is that her current dressings aren’t providing her skin the proper drainage it requires, nor does it provise sufficient padding to prevent blistering and skin sheering. Her bandages aren’t the ideal for her skin and the makeshift MacGyvers get the job done but they leave much room to be desired.
What I know is that we will have to contend with more blisters until such time that we are able to raise enough funds to buy enough ideal woundcare to last her at least a couple of months.
I know that the lack of ideal wound care contributes towards her anaemia, ectropion and other complications that come with EB.
I know that with our next bandage change, my heart will probably sink a bit as I see a few more blisters that could have been prevented. I’ll turn my face away hoping she didn’t see the change in my expression, whilst my heart silently prays for a cure, and an end to this silent war.
But I also know that we are of the fortunate ones who have things easier than most.
We have our families and friends on whom we can rely, and my husband and I are blessed to have each other to lean on in times of difficulty.
And we are eternally blessed to have a community of people who generously aid us with their time, wealth and energies, whilst apologizing that they cannot do more.
When wanting to contribute to wound care people often tell me “I want to contribute towards her care on a monthly basis, but I can only give ‘so much’ [enter amount here].”
If only they knew that they weren’t ‘only giving so much’. With every rand gifted they are providing hope, they are contributing to less blisters and skin sheering, they are allowing us an opportunity at gifting her with a better quality of life, whilst solidifying our faith in community.
When you give, you aren’t only giving a R5 or R500, time, effort or prayers, you are making a difference in the life of a little girl, a little girl who only wants to play, but whose life is somewhat limited by the bandages she lives in every day.
Please let me know how I could contribute. You should see my email address in the details for this comment, so you can send me an email with the details.
JazakAllah
Yacoob
Assalaamu ‘alaykum
May Allah reward you abundantly for wanting to assist with our daughter’s wound care needs.
I’ve triple checked my email and cannot seem to find your comment email in my inbox.
Could you perhaps mail me on aqua257@rocketmail.com and I will forward you the relevant details insha-Allah.
BaarakAllah feek
May Allah Azzawajjal grant you her parents strength to care for her and grant her complete shifaa. My heart goes out to this little angel.
Allahumma Ameen.
JazaakumuLlah khayran.