darn reflux...

"you are the mom...you call the shots"..."you are your child’s best advocate”…these statements do not ring true in this house…Maddie also has a dad and he also knows a thing or two…and then Maddie has her doctors…this is a hard post to write...I have rewritten it in my head a few times to say the least…on Friday we met with Maddie’s doctor…my mission was to take her off the Reglan…mission was not accomplished and will not be for awhile…Cha tells me we hired experts to tell us and help us care for our daughter…not to take there advice of those experts would be detrimental to Maddie’s health…the doctor simply said if we take Maddie off this medication…Maddie will have to have surgery again because of damage the acid reflux will cause her esophagus…at birth Maddie was put on Ranitidine to help with “possible” acid reflux and to protect the repair of her TEF/EA…the swallow study confirmed Maddie has “severe” acid reflux…when we saw her stomach not empting and her esophagus not contracting the Reglan was introduced…the risk of her not being on this medication far outweighs the possible side effects…the doctor came ready to have me understand that there are very few options for us…and she reminded me of fear mongering that happens with medications that are in litigation…I got the point and Maddie will remain on the medication until further notice…I came away reminded that being Maddie’s mom is different then being Max’s mom…that I am supported when it comes to Max…I am the expert…when it comes to Maddie…I am not…I am the one that gives her love and support…but I am not the one that makes the decisions…I am the one that follows through on the decisions that are made…