Monday, October 18, 2010

darn reflux...

"you are the 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…

1 comment:

  1. From day one, I mean DAY ONE, I have felt that Russell is "everyones" baby...not just mine. That everyone wieghs in on what is best for him, not just me...and like you described, I find its different being a Mom to my other kids than it is to Russell...I feel like others are in control and I am not so much...At first that was very hard for me to accept...But now I feel better about it. The Doctors and Specialists are all just trying to do whats best for him, and sometimes I need to just take the advice and go with it.
    Sorry to hear Maddie needs to stay on the medication...But if thats what she needs, I guess it needs to be done.
    You are a great Mom, Maddie and Max are lucky to have you :)
    Love the new picture at the top!!