stint time...

high ho high ho off to Denver we go...again...one week from the day...Maddie will have surgery to place a stint in her esophagus...lets just say the balloon dilation and botox did not take! when we returned from Denver last week Maddie did not return to her "normal" eating routine...she resumed basically how we left off...greek yogurt...not even her favorite cheetos and vegi stix...now she is down to juice or water and no milk...nothing thick...her esophagram today showed a VERY tight stricture with not much room for her to sustain...her esophagus looks like a sand timer hour glass thingy...very narrow...there is a sense of relief with this surgery...there will be a semi permanent meshed tube that holds her esophagus open...that is a sense of safety for her and eating...it has been a more then stressful event every time Maddie opens her mouth to put anything in it since she was born...the only down side to this procedure is that we will stay the night in the hospital...and there is a possibility that the stint will not work with her...if she does not return to "normal" they will remove it and we will be looking at another surgery on her esophagus...maybe while she is in the surgical room I will write a how to book for a new parent of a child born with TEF/EA...and make sure to tell them that this is not the "best of worst" like we were told...it is just what it is...aggravating, scary, stressful, time consuming, hard to watch, overwhelming, no control, and most important --worth it...all of it