I have to share what has finally worked to get Cicily's g-tube stoma (The opening in her skin where her g-tube goes into her stomach.) to heal. We've always used gauze on and off to help the site. On to soak up all the gooiness, and off again to let it "breathe". Since she had the g-tube placed when she was 2 weeks old (Oct. 06), the stoma has had issues with granulation tissue, more granulation tissue, and her stomach lining coming out of the hole. Nothing we or the surgeon tried was working long term.
So on July 1 when the distractors were placed for her JD, Cicily's general surgeon, who initially placed the g-tube, Dr. Graziano, did a resectioning of granulation tissue on her stoma. After surgery it looked so much better! No more stomach lining popping out. It hurt Cis like crazy though for the first 2-3 weeks post op.
I also asked Dr. Graziano (another Dr. we would heartily recommend to anyone) to prescribe a new gauze to put around the g-tube site. It's called Mepilex AG, it's a foamy guaze treated with silver. I've put that on the site every day and kept it on all night and the site looks better than it ever has. There is not a trace of ooziness or blood anymore! It's so great to not have Cicily be able to pull on her g-tube and make it bleed and no more bloody pajamas (at least by the g-tube). So, spread the word to fellow g-tubers - Mepilex AG. It comes from a medical supply company and it really worked for us.
(Do you think this could score an advertising profit from the company? ;))
4 comments:
You should get something from the company. I'm glad you found something that works!
That's great! Is it treated with silver, like colloidal silver?
Hi Janalyn! I'm thrilled that Cicily got her screws off! How exciting for you. I'm also really interested in this Mepilex AG - Faith had her G-Tube put in at 10 days old in Oct' 06 too and it has never completely healed either. However, her granulations sounds different than Cicily's - there's a tiny spot that just won't close, but oddly there's a bridge of skin (or scar tissue) between that spot and the actual G-Tube hole. We've applied silver nitrate off and on for 2 years and it always comes back. I'm going to see if we can try this so THANKS so much for writing about it!
Are you coming to the Microtia Atresia conference in CA in October? I am and I would just love to meet you in person!
Best,
Robin
Dear Janalyn,
I heard about your daughter through a collegue in Sweden and was touched by your daughter Cicily's story. I have not heard about Treacher Collins Syndrome before. I am the VP of Marketing for Molnlycke Health Care who manufacturers and sells Mepilex Ag. I would love to help you and your daughter out by sending you a supply of the product. Please feel free to contact me at 678-250-7918 or at randy.schwartz@molnlycke.com.
Kin regards,
Randy
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