But enough about that...
Dr. Ali (Jonah's dermatologist) had left a message on my phone at some point today. I didn't get it until about midnight. She said that she had faxed all of Jonah's biopsy results to Dr. Fine (Vanderbilt specialist; EB extraordinaire) yesterday, and after looking over everything, he said that he is very, very (maybe only one "very"... I can't remember) optimistic that Jonah has the NON-HERLITZ form of EB. This is VERY good news. Praising God like a mad woman. Trying not to dance around the room. (More because our room currently looks like a tornado just passed through than a dignity thing... I have no shame). I thought you guys were just praying for no infection. Very sneaky... very sneaky.
Here are a couple pictures of a very cool jacket-sleevey thing we tried to rig up for Jonah to help keep his arm bandages on. It's one of a pair of leggins (Thanks, Aunt Amy) made out of a very, very soft, silky material. We cut two little slits in it, so now he's wearing it across his back and on his arms. It's pretty loose on him and stretchy, so it may do no good, but worth a shot! I don't think it will cause new blisters, but who knows???
Don't be jealous that Jonah rocks your socks off. No worries. You guys are cool by association.
A few questions for my EB peeps (if you don't mind):
1 - What kind of pain meds did you go home on and how did you keep your baby still to do OT and dressing changes? (For me it's less a pain issue - although of course I don' t want him in pain - and more of a sedation issue as far as needing him to be still - or at least manageable.)
2 - How do you keep the top of his bandages from rubbing new blisters on unblistered skin? We try to keep the Vaseline gauze wet with Aquaphor (the Stanford video says the leave some gauze sticking out the top, so the Curlex (sp?) doesn't rub), but he always seems to have new blisters right above where I stopped the bandage the previous night. I tried a thick strip of mepitel around the top tonight, hoping it will stay more moist than the Vaseline gauze. (We are back to Vaseline gauze because that's what they use in the Stanford videos... I'm not sure what they didn't like about the Mepitel/Mepilex... whatever it was. I'm sure it's just trial and error figuring out what keeps the most secure).
3 - Any easy diapering solutions? It's not going to be practical to cut the elastic out of diapers and let him just lie on one once we get home. Having to change his sheets/blankets all the time and redress/patch up his leg bandages because of urine and stool are not practical options for once we get home.
(You can comment here or email Jonah's address if you want... THANK YOU so much!!!)
Seeing as how it's almost 2 am, I should probably go to bed. Thanks again for loving Jonah so much and praying over and over and over again. We are encouraged by tonight's news, but are still dealing with the possible infection issues. GO ORAL KEFLEX!
Hope everyone has a great weekend.