First Dilation Since Surgery

Audrey sailed through her dilation surgery today. Turns out, no rocks, sticks, or acorns were down there after all (causing her to reject food last night and throw up her pureed avocado and medicine), she had simply constricted down to a tiny 4mm hole already. That was really, really fast. Surgery wasn't even a month ago. Dr Manfredi dilated her up to an 8mm opening, and plans to do a bit more next week to get her to a 10, then she'll need at least a couple more dilations to get her to the 12-15 goal. Even though I know this is different, I'm having some creepy deja vu.... last year we did this same thing, rapid restricture every time we'd start to make progress on oral feeds, lots of dilations, and then eventually we wound up in a terrible place, with "friable" brittle scar tissue in the esophagus that tore easily and landed her in the hospital for most of June with a life-threatening perforation. This time has to be different. Of course, last time we had a tight repair and the two sections of her espohagus were basically pulling apart and filling in with scar tissue, but it feels so familiar, the rapid restricturing just when we start getting somewhere with eating.... it makes my heart clench in fear just to feel like it's all happening again. Dr Manfredi is going to inject a little steroid into her scar next week, a treatment that is not available in Utah and a major reason we are here, and hopefully that will calm down the scar tissue and keep it from closing off so quickly. We'll also keep on top of her acid generation with her PPI meds, and hope to avoid a major surgery for reflux.

My husband's aunt asked me if she could receive a transplant of stomach and esophagus.  I don't know all the reasons, but that kind of transplant is not done anywhere in the world. I'm sure it is for a major reason, perhaps because the nerves are so important and are too tiny and complex to connect in a transplant. Certainly excellent surgeons must have tried it and have found it is not feasible, I almost don't want to know, it probably resulted in the recipient passing. But thank you for the thoughts, yes we had wondered that too at one time back at the beginning. I'm not aware of any laser therapy for esophagus, but you are right that we are here primarily because of the focused steroid injection and/or "needle knife" therapies that are not available in many places, which I should have mentioned are hugely successful. Audrey will be in the best hands in the world here for this specialized work on her esophagus. Dr Manfredi will do a great job on her, it's just a bit scary to be in such a similar place as last year and having seen where it can lead. It will all work out, it's why I'm here, to give her the best chance of success. We are doing all we can do, and one day soon I have faith that it will be enough.