Whew... it has been a day, Friends. I haven't had an "EB totally sucks" (or "EB is a sonofabitch" as I said on Facebook) sort of day in a long time. As far as Junctional EB goes, Jonah is really blessed with good healing, no corneal abrasions (so far), and only minor breathing issues. Honestly, for us, our biggest issue is that he still has major issues with a terrible gag reflex, throwing up, and having major psychological issues with eating, but we could be dealing with so much more.
And I forget sometimes just how fragile he is.
Last night we let him play outside for too long when it was too hot, and he paid for it today. Last night, when we got him home, we went to change his diaper for bedtime, and an area of skin right around his bum hole was gone. Just gone. No blister, no warning. Just not there. And it is killing him any time I change his diaper. This morning, when he was poopy, he was screaming in agony, raising his whole body off the table when I was trying to clean him (impossible, by the way). Then he starting crying and yelling, "Boo boo! Boo boo!" Broke. My. Heart. All day I've tried to use a Triple Paste/Maalox combo, but it's so raw and in such a tough area, I can't get the ointment to stay on or use a bandage patch. I called the doctor and they've called in some kind of wash, stomahesive powder, and cream that will hopefully help. The pharmacy had to order it, so we'll get that tomorrow. All kinds of creams and treatments are great but don't work when the area is so raw you can't get any of the good stuff to stick. Ugh. Of course, his bottom being in bad shape made bath and bandage change harder than they usually are, and I'm doing things on my own now (my choice), so it just made me a little stressed out.
And then a couple other little things happened that weren't really big deals in and of themselves, but just got to me because I was so down about Jonah's bottom and EB in general.
And the little boys I fell in love with on adoptuskids.org are no longer there, and it makes me sad. I know it shouldn't have looked so early, but man, they'll steal your hearts. Don't say I didn't warn you.
I'm hoping things (his bottom, my attitude) will be better tomorrow but I do so appreciate you guys sticking with me even through the crappy sorry-for-myself-and-my-baby days.
And all this tornado stuff sucks too. Enough already.