Namine’s skin in particular, which we don’t discuss too much, is definitely worth bringing up here. We don’t talk a whole lot about Namine’s skin because, frankly, there are larger issues – her heart, her airway, her legs – but we would be fools to ignore any aspect of our child. We would be poor, poor parents if we didn’t consider every bit of her as important as the rest.
Namine has extremely fragile and tender skin. She is extremely allergic to adhesive. This, frankly, sucks. Because of all the procedures – surgeries, blood draws, hospitalizations that require extended stays – she has had to be exposed to medical tape and the like, and there’s nothing we could do about it. When Namine was first decannulated, they said to tape gauze over the stoma. We tried that, but Namine got such a bad rash that we had to do something else. It was Jessica that came up with it – using the trach ties to fasten the gauze over Namine’s neck.
And that is a perfect example: treatment for Namine’s skin is more preventative than responsive in nature. Once she gets a skin rash (and not just from adhesive, either; she can’t use any skin products except for Burt’s Bees), all we can do is try to make her more comfortable and ride it out. If we take good care of her skin, it will go away. That’s why knowing Namine’s skin is so important, and communication between parents and hospital nurses is crucial.
There is one persistent thing that causes Namine’s skin to rash, blister, and hurt. It’s her g-tube. She doesn’t use it anymore – and why would she? She eats like she’s making up for lost time. Last week she had the MRI to determine what hernias, if any, can be fixed; during that same procedure, she’ll get her g-tube out as well. Because there’s so much scar tissue built up around the g-tube (just like her trach stoma, actually), it’ll have to be closed surgically. It’ll never close on its own.
Thanks, Barbara, for the original thought-provoking post.