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Hi my name is Kim and I am a recovering bigot and ignorant sole…once was the day I agreed abortion was a woman choice…sole choice…once was ...

Friday, March 9, 2012

hiccup...:(

when I awoke with Maddie in bed thursday morning I was full of hope...that today was the day that her issues with choking and not being able to eat solid foods would be over...she was snuggled in so tight to me...Maddie in the morning understood that today was different and that she was not going on the adventure she was hearing her brother talk about...she had not ate in a couple of days and took a few sips of chocolate milk shake the night before...I splurged and went to my favorite place to get coffee it is close to the hospital and it was as perfect as I remember..usually Maddie and I would share...but she was not having anything to do with food at this point...we checked in and everything seemed as normal as usual..familiar faces, smells, areas...nothing out of the ordinary...she had surgery to place the stent at 1 pm and was out of surgery at 2 pm...the doctor explained he was hopeful...he said the tighting of the esophagus was up towards the top more then he thought...but we would know within 24 hours if the stent worked...mind you this is a last ditch effort almost to help her esophagus open...otherwise we are runing out of "good" options...the nurses came to get me...I could tell by her face that it was not good...and I heard Maddie whimpering like I did when she was in the NICU from down the hall...and she was not ok...Maddie was out of it she did not acknowledge me which is off...she was coughing, throwing up and just not ok...I sat with her for 2 hours in the pacu and nothing was better...the nurses kept assuring me that this was "normal"...we made it to the peds floor...and Max and Chad were there to see how the Maddie was doing...she had no response to them...no response to her dollies...Maddie was just not right...the throwing up continued for the next few hours...it was changing colors...it was smelling different...and she was still limp...and then things started happening that never happen when I ask them to...doctors were moving, esophagrams were done with in minutes and the doctor was here...esophgram showed that her esophgus at the bottom of the stent had tightened...at 7 pm last night the stent was removed...it had moved and her body was rejecting it...our hopes of an open esophagus are gone...we are back to square one...and Maddie is pissed...not eating or drinking still...and as a family we have no answers...her esophagus closed in 1 week...we live 5 hours from her doctors...what are we going to do...currently she received a feeding tube...the last thing I wanted...and I hope today it will be removed...but I am not sure that is the best idea to advocate for...at least I know she is getting nourishment...we are at a loss...with no answers really in the future...but today is a new day and maybe the doctor had a bright idea last night....

17 comments:

  1. Oh, no. I'm so sorry. This must be so hard for you and for Maddie. Sending hugs and positive vibes your way.

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  2. Oh, I have tears in my eyes reading this. My heart is breaking for you and Maddie. I'm so, so sorry. :-( I was really hoping the outcome would be different. (((hugs)))

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  3. I am so sorry to hear this. I will be praying for Maddie and for you. So hard for you to have to go through.

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  4. I am so sorry. I am praying, I cannot imagine how you must feel. Don't lose hope though even when it seems lost. I know there will be answers....sending so much love your way.

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  5. Oh no! Dang that esophagus! I would leave the feeding tube in until a plan is in place. Praying for some good answers!

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  6. I'm so sorry. Medical issues with our little ones are the worst. :( Hang in there Mama. Will send my prayers to Maddie for some answers and healing.

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  7. Oh no. I'm so sorry for you all and poor little Maddie. Yes, feeding tubes suck but the poor girlie does need food. Sending prayers that a good answer will come soon!

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  8. Thinking of you and praying for answers!

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  9. I'm so sorry that things didn't go better for Maddie....poor little thing. Praying that the doctors can come up with some good answers for her. Sending prayers for Maddie and your family!

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  10. I'm so sad for you and Maddie - this post made me cry because I wanted this so badly to work! I'll continue to send lots of prayers and hope that something happens fast for all of you! Give that brave girl a big hug from me!!!

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  11. On no! Praying for some good news soon

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  12. Oh Kim, I'm so sorry. I can't imagine what you are all going through. Poor Maddie...I hope you guys can get some answers or a solution to all this soon. *hugs* from me. Thinking of you.

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  13. That sucks. Praying for Maddie and you.

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  14. Oh no. Oh no! That sucks so much. I'm so sorry. Poor Maddie. Poor you. I'm so sad that you all had to go through that. Poor baby. Lots and lots of good thoughts, prayers, and HUGE hugs being sent to you!

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  15. Just got back from a 6 hour drive to Brisbane , that's a long way from home to your doctors, I know I've just driven it! Hope Ther has had a brain wave and Mads feels better with some food going in to her tummy. Hugs my friend

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