Good Morning. So we never went to the doctor on Monday because Dr. Defusco couldn't get in touch with the nurse that draws Tripp's blood (we are kind of partial to one nurse, because he has to have it drawn in his head) and I didn't want to make a trip there just for the pediatric surgeon and then have to go BACK for the bloodwork. You follow? :)
So as of now, Tripp has taken Cipro too many times and it's now resistant to his pseudomonas. Great. So the other options are daily antibiotic injections (torture), IV antibiotics (consists of being admitted), or some form of topical (we voted this one). So Dr. Defusco is supposed to be calling in a prescription for some type of topical antibiotic opthalmic ointment that supposedly is going to treat his pseudomonas (in his scrotum area). So we will try that today and then go for blood work either tomorrow or Friday (I hope).
Tripp's days have been pretty rough. Lately, he's been playing a little bit more... especially if it's right after bath and he feels better. But lately his baths have been HORRIBLE. Not only does he KNOW when it's coming and has anxiety- but you can tell it just plain HURTS. He's in SO much pain for his baths. I've used saline baths, epsom salt baths, and now having to add a capful of bleach to his baths to kill all the bacteria he's getting in his open wounds. Pseudomonas is a bacteria that's common in water, soil, and skin... but it usually doesn't affect us healthy ones... it affects people with a low immune system and open sores. It's dangerous because it can get into your blood stream and you can become septic. We've been good about cleaning everything with those really potent hospital wipes that supposedly kill all those bugs. But it's almost impossible to be 100% sterile. Anyway, I'm tired of my baby feeling bad... I want to PLAY and be back to "our normal."
I received the coolest shirt in the mail... On October 30, there will be an EB race in Ashville, NC @ 9am. It's called Heather Keyes Rodgers EB Fun Run. It will bring EB awareness and the proceeds will benefit DebRA. These 3 nice ladies (Melanie, Kendra, and Lacey) made shirts for the race, and were kind enough to send me one. See?
Look at those kiddos? Cute huh? All four of our children were born within a few months of each other. I thought that was really sweet. And nothing makes me happier than spreading EB awareness.
Speaking of EB awareness, National EB Awareness Week is next week- October 25th-31st. SO, I want to TRY and do a post every day. But only if I get your help. I need a topic that you want to learn more about- either about Tripp, or EB in general. And I will try my best to discuss a topic a day with you, to try and raise as much awareness about this horrible disease as possible. SO, what do you want to know more about? Give me some ideas and I'll try my hardest. No promises, though... you know how my days can change quick:) Hope you all have a great day!
"So then, do not worry about tomorrow, for tomorrow will worry about itself. Today has enough trouble of it's own." -Matthew 6:34
My little HOT mess.
Love,
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