Sunday, July 17, 2011

again :(

Thursday was the day that would not end...I knew that it was going to be a long day when both my kiddos were up when I had gotten home from walking...at 6 am...never a good sign...Maddie was off...clinging and just not herself...I began to reflect back on the things we had done; what we had played with...what she had eaten...to try to come up with her demeanor...she was arching back...stretching herself...screaming at me and rubbing her throat...I remembered the water balloons we were playing with the day before...and the hot pink one that she bit through...but I thought I had accounted for all of the pieces...I also recalled that she had choked at lunch on Wednesday and she did again that night at dinner...I was starting to put the puzzle pieces together...so Thursday morning I gave Maddie her normal everyday breakfast...Choboni and applesauce...she ate maybe 4 or 5 bites...very odd and she was slumped over in her chair...she was not interested in eating much...I chalked it up to her new tooth coming in...at lunch I made her potato and garlic soup...her favorite...she choked...she was screaming could not catch her breath...I had to perform the heimlich and when that was not working I was hanging her upside down from her feet trying to get whatever was in there out...the silly thing is she choked on mashed up smooth food...she then began tugging on her throat...we cried and called Chad-- told him I thought we needed to go to Denver...this may seem crazy that this is how we decide to go...we wait, we watch, we see if we can avoid what we know is coming...I napped Maddie woke her up and she would not sit up...she would not eat...so off we went...to Denver at 8 pm...4 hours later we were at the ER at PSL and I knew the day would never end...we made it to the peds unit by 1 am and we finally got to rest...8 am the best sight ever...Maddie's surgeon peeked in and she scheduled us for surgery...by 10 am Maddie was in surgery and by 12 pm she was waking up...they found nothing in her esophagus...they found something more crazy...more hard to wrap my head around...she was stricturing...only 5 months after her last dilation...she stricture...this was fast and very sudden...I always held onto the assumption that stricture was a slow process that Maddie would not be in pain...but that was not the case...Maddie was in discomfort...literally...she was eating things one day and the next day the esophagus was to narrow to fit the food through...so reflecting on the little signs of Maddie's stricture...her tongue protrude more...it was often hanging out...she was in discomfort...she was refluxing very severe...I could often smell it in her breath...she was clinging to me...she was just not herself...she was pulling and rubbing her throat...and her eating was horrible...my post about hating to feed her...was because my little girl was struggling...and I was just not thinking...that it could be her esophagus getting smaller and smaller so quick...so she was dilated again to the size of her thumb...and she is now recovering...it is not as smooth as the last time...she is still struggling to eat...she is in pain...and she is the bravest person I know...we are going to try some other things to help her esophagus...and I hope it will be here in Casper and not 4 hours away...I think the thing that I am the most in flux about is that I am not surprised...I am not over stressed...I have no emotion with the idea that this is our "normal" that Maddie needs tune ups...what does surprise me is the monopoly money we play with to fix my child and pay doctors, hospitals, surgeons, and pharmacists...how insurance will pay for a $300 a month prescription but not a $200 a month prescription...how when doctors speak I no longer hang on there words...I hear them...I research, I discuss and we find what works best for our Maddie...I always think that this is it...that we have found the light at the end of the eating tunnel...just to be brought back down to the reality of no control...just 2 steps forward and a few steps back...but Maddie is alive and we will see a GI doctor next week to help our team of doctors to care for our Maddie...

13 comments:

  1. I'm so sorry. Every time this happens I think how brave you all are and how hard and scary it must be. Thank God she is ok now. Sending you big hugs!

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  2. OH MY GOSH. I was reading this with baited breath and tears. I'm so sorry. I can't imagine how scary! I hope Maddie continues to feel better and we're sending LOTS of hugs and good juju your way!

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  3. I cannot even imagine all you are feeling. I am truly sending love and prayers your way. I wish there was more I could do to help you. It sounds like you are finally home safe and sound...and on the mend.

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  4. Wow! What a wild ride that must have been! Our hospital visits have been for different reasons, but I know the feeling. I told a friend that I think they say our kids have "designer genes" because they are so expensive! So glad it didn't shake you and you were able to roll with it. It is amazing what we can handle (and how much we can trust our own instincts and research) when we are put in front of these situations. I sure hope all works our quickly!

    Thinking of you!

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  5. Ugh how scary! Its also makes me wonder. Arina chokes a lot when she eats normal food. I always wondered if she aspirates normal foods because she aspirates liquids so much. And that her coughing just brings them up. But the other day she was eating her macaroni and cheese, and she just started freaking out! Crying, wouldn't eat anymore. She did drink her bottle though. I wonder if this is what is happening to her! Did they do a scope to find out what Maddie has? And has she ever had a FEE's study?

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  6. Oh Kim, I'm so sorry! That sounded so scary! I'm really glad Maddie is ok. You are one of the toughest Moms I know, I would have been a wreck, EVERY time! Sending a hug to you and Madds...Hoping your team of Doctors figures something out soon that will work for Maddie.

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  7. This is so scary! For you and for Maddie. I haven't been on the computer for the past few days, but I wish I'd known you were in Denver. I was there for training (just a few miles away) from Weds to Saturday and would have loved to come and hugged you!!

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  8. How awful!!! Poor little Maddie - and I can't imagine how terrifying that must have been for all of you. :-( I can't remember if I mentioned this to you before or not, but when I was a kid, my mother had to have surgery on her esophagus to make it bigger. My whole life up until then, she had to eat very, very slowly, taking small bites so her food would fit through her esophagus. I wonder if it was something similar to what Maddie's got. But now my mom is just fine, and has been ever since the surgery. I hope you can get answers/help soon!

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  9. How scary. Praying for you all :)

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  10. Colin and I said a prayer for Maddie tonight. I hope she's feeling better better and I hope you are too!

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  11. I have to say that your daughter Maddie is the cutest thing ever and that pole dancing picture... ADORABLE! You should make that into a poster and sell it! I am sorry to hear that she is having medical problems. Nothing is worse than seeing your child in pain and not being able to take it away. My son does not have Down syndrome but he does have a disease that causes lots of problems... he's had 2 major surgeries and I am planning on never having to see him in a hospital bed again! As a mother of a child with physical and learning disabilities… I am always interested in hearing the stories of others and how they have coped with raising a ‘special’ child. I recently saw a film called ‘Dakota’s Pride’ which showed the MANY wonderful blessings children with Down syndrome bring to this world. I can’t even express to you how moved I was by this film! I was amazed by all of their accomplishments… one young man with Down syndrome even graduated from college, drives his own car and is an advocate for other adults with Down syndrome! I know you get to experience these many wonders on a daily basis, but I thought I would share the following link for the video. I give it 2 thumbs up... way up!!! http://www.dakotaspride.com/ Thanks for sharing your story in a blog for the world to see! Hugs to little Maddie and to you too!

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  12. Wow! Thank God you trusted your instinct and took her in. I don't know much about stricture, but will read up. Hoping that little Maddie is feeling better soon.

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