Wednesday, May 15, 2013

update of sorts...


Tracheoesophageal fistula
Classification and external resources










A tracheoesophageal fistula (TEF, or TOF) is an abnormal connection (fistula) between the esophagus and the trachea. TEF is a common congenital abnormality, but when occurring late in life is usually the sequela of surgical procedures such as a laryngectomy.

TEF the bane of our existence...the "issue" that we were told was a non issue....that if this is the worst thing that was "wrong" with Maddie...it was an "easy" fix...yeah...no it is not...no it is not over and it is not "fixed" per say...in a round about way it has NOT been addressed...the TEF is the cause of what is "wrong" with Maddie...something that should have been diagnosed at birth...instead it was diagnosed 3 weeks ago...

Part of the Areodigestive clinic is seeing a pulmonary doctor...a doctor that we should have been seeing since Maddie birth...I am numb...surprised....confused...saddened and embarrassed that we just learned of this new diagnosis...Maddie was diagnosed with Trachea Malaysia....it is when the trachea is oval flat instead of round...it is described as floppy...she does not have the strength to cough up mucus...so in turn....when they scoped her lungs they found a lot of mucus...in the lungs, stomach, on and in the trachea...there is no quick fix...so Maddie has to do "treatments" 2x daily that consist of a vest, hypo-tonic mask, and inhalers...this helps move the mucus and encourages her to cough....mucus is not good...it can grow lots of bad stuff that can hurt the lungs....this "treatment" is helping prevent bronchitis...we are not sure how long she has had this issue with mucus or how much damage it has already done to her airways....so we do a ct scan in a couple of weeks to hopefully have more answers...yes she will hopefully grow out of this...no there is nothing they can do to "fix" this...just take measures to prevent blockages to the airways and branches of the lungs...


Maddie had her tonsils and adenoids removed 14 days ago...it was by far her worst surgery and recovery...but in the end it was for the best...I see a change in her sleeping...I see a change in herself being more comfortable...she did not eat for 6 days and very limited drink...she lost more then 6 pounds...and I thought we had made a huge mistake...but in the end she was amazing...her body healed amazing....she was on the verge of going back to the hospital...to the next day eating and drinking like she had starved herself for 6 days...I cannot blame her...I am just so thankful it is done...we stayed a total of 3 days in the hospital and I am glad we took the slow approach because I think it helped her heal faster in the long run...


Maddie still has esophagitis so they switched her medications and are watching her a tad different then before...still trying to be proactive to a closing esophagus...we switched GI doctors and I am not sure the change is permanent...it was just more convenient to see this one for time being...competition is good...right!


This is where I start questioning...why we even go to the doctor...crazy...maybe...selfish....probably... but there is part of me that wants Maddie to be a normal little girl without medications, oxygen and treatments...it becomes alot to handle as a mother to be constantly worrying about medications and treatments and time to do everything....I want Maddie to learn and grow...to play and do things in her time....but instead she is dictated by other things...I just want relative healthy...I just want a doctor to tell us that she is good and that she will live a long productive life...I am trying not to complain...I really know there is worse health issues..really I do...I am thankful she is alive...I am thankful that she is my daughter and that I get to fight for her...I just want there to be simple...


5 comments:

  1. Oh, Kim. I am so sorry this is such a constant battle and there does not seem to be any break for Maddie or you. Yes, you deserve simple just for a while...just to catch your breath. I know you said there is always someone off worse but that does not make it any easier dealing with the cards you are handed. We all have our own battles, and in our reality, they are real..they are consuming...and we all need a break from them. I hope you know I am thinking about you and praying for simple for you...for Maddie. This bridge will be crossed because you are strong...Maddie is strong...hang in there. We are always here to listen, love, and support you in this blog world. :)

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  2. This breaks my heart. I can hear your weariness in your words. I'll hope and pray for healing and playing and joy and simple.

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  3. What a touch little lady you have there. Praying for you all.

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  4. Oh, that first picture breaks my heart. So sorry Maddie has to go through all this. And you too. I can't imagine how stressful that must be at times. Hugs to you my friend. Hang in there. I really hope this is something Maddie outgrows eventually, poor little thing :(

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  5. Oh wow, just another thing to add to the list. You are doing a great job getting Maddie exactly what she needs. It's very tiring, the worry, I know just how you feel.

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