Friday, August 10, 2012

Esophogas


When Maddie was diagnosed with Down syndrome in vitro...it came with more...so we went and visited with a surgeon...and I know I have said this before...she said that if this is all that is wrong with her...it is a great diagnosis...so I held that close and I would refer to that comment throughout my pregnancy and after Maddie was born...so Maddie had the "fix" surgery...she had her esophagus attached to her stomach and a blockage removed from her esophagus to her trachea...done "fixed"...and then Maddie wanted to eat BIG people food...so I would give her pured foods and she would choke...I would give her a macaroni noodle that was mushed or cut up in 3...and she would choke...I would give her a mushy half of a cheerio...and she would choke...so chobonni was a staple in Maddie's diet...it has been two years from then...10 surgeries...and finally her esophagus is staying open...this is the first time in 3 1/2 years that we do not have a procedure scheduled...we have no planned trips to Denver...so in that time I have referred back to what the young surgeon said to me...this is a great diagnosis...an "easy" "fix"...what I have come away with...it is an easy procedure for specialists...it is easy for them to diagnosis and "fix"...it is not for the parent...it is not for the patient...I am excited that things are looking up for us...that Maddie is seeming to do better and just in time for BIG girl school...so as I reflect back...I would give suggestions for TEF/EA survivors and there parents some of my helpful hints... be informed of where the stricture is...know who your surgeon is...and what tests and procedures will be performed...and who will perform them...have a plan on who to call and what to do if your child chokes...know what is expected of your child and you...ask questions...write the questions down...write the answers down...ask advice but do NOT take as gospel...know that this is a doctor that has not tried to put it into practice...in theory feeding your child should be easy...it should be natural...with a child like Maddie it is NOT easy and it is not natural...does it get better...there are days that Maddie eats good...and then there are days she does not...some will say...that is with any 3 year old...sure...but please do not say this to a parent with a challenged eater...I would say go with what you think is best...it is a hard leap to take...but I have had doctors tell me to try this...and then look horrified that I tried "it"...its ok for your child to eat breakfast for every meal...if it works do it...if we supplemented to much with Maddie she was not hungry and would not eat...it took Maddie 3 years to learn to chew...and I still have to prompt her...last week we were told that there are no restrictions on Maddie's eating...to go with what works...I took this advice and ran with it...but I have always given Maddie what she wants to eat just motified...why? because I am her mother...and I have never forgotten that...I have learned doctors are NOT always right...and they do not always know what they are talking about...also be careful of "support" groups...fear mongering may NOT be the intention...but when a parent is scared and unknowing they tend to listen more and react with out common sense...I did...and it left me feeling helpless with no control of my daughters health care...however now I feel like the expert...I have done the research...I have read, asked questions, and experienced enough with a strictured esophagus I know what works for Maddie...TEF/EA sucks....it is not the best diagnosis but it is survivable and completely tolerable....

3 comments:

  1. 10 surgeries! My goodness Madds is quite a trooper. So glad things are finally starting to look up for you guys and there are no upcoming procedures scheduled.
    Kim you're amazing, and you have most definitely earned the right to call yourself an expert in this field!

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  2. I agree with Jenny...you are amazing and what good advice to give to those with the same diagnosis. I am so glad things are looking up...and so much better then have been in a while. I get so frustrated with the medical field as a parent, a patient, and as a nurse.

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  3. Oh my goodness, 10 surgeries?! Doesn't sound like an 'easy' fix to me! You give good advice to those going through the same thing. You're a great mom.

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