Wednesday, March 7, 2012

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

9 comments:

  1. Lots of prayers for you and for Maddie...I'll be sending lots of "let this be it" prayer and positive thoughts! Big hugs!!!

    ReplyDelete
  2. Oh man- I really hope that this will be a better fix for Maddie!

    Are you guys here now? I'd love to bring dinner (or lunch. or breakast. I'm easy!) down to the hospital for you. Seriously. I can be down there in about a half hour. Hospital food is no good; lemme bring something better! Email me! :) (aimeesbowlofcherries@gmail.com)

    ReplyDelete
  3. Hoping all goes smoothly!!!

    Weird - just this morning my husband was talking to his step-mother and she told him she has the SAME thing. They told her they recommended the balloon thing, but she'd have to have it done 3x/year. They wanted to avoid a one-time surgery because of her age, but she said she'd much prefer the surgery over having to have the balloon thing done 3x/year.

    ReplyDelete
  4. Oh, I will definitely be praying. Sending love your way, of course!

    ReplyDelete
  5. Oh no that sucks! Man poor Maddi has been through the ringer..You too! I feel for ya, thinking of you and hope all goes well.

    ReplyDelete
  6. Sending prayers your way... I hope the surgery will be successful for sweet Maddie!!

    ReplyDelete
  7. I was hoping and praying everything would be better:(

    Keeping Maddie in my prayers!

    Thank you for your comment, you have no idea how good it made me feel!

    ReplyDelete
  8. I'm so sorry. This has to be so hard. I really hope this works for her, poor thing. I'll be thinking about you both!

    ReplyDelete