Sunday, July 31, 2011

Angry Esophagus


Maddie’s esophagus got angry and strictured…I never thought I would hear those words…or even think that an esophagus had a temper…but like my little 2 year it does…we visited the pediatric GI doctor…I like him…does it matter if I like him…not really…but this is what he specialized in…angry esophagus…he gave us some different options…he gave us the reality that this is not going away…when Maddie was diagnosed with TEF/EA the surgeon said if this is the only thing wrong with your little girl…then you are lucky…not feeling so lucky at the moment…we have big decisions ahead of us…the GI doctor will coordinate with Maddie’s surgeon on the next step…options…dilate the esophagus with a balloon or insert a stent if the stricture is not to high in the esophagus…then repair her reflux…surgically repair this…WOW to say the least…we are getting a call this week to tell us what the two doctors think is the best route…do we wait until she strictures or chokes severely again…or do we prevent a trauma…insert “F” word…is all I can think and repeat in my head…this will all be done orthoscopically…this is a good thing when it is NOT your child…to the heart doctor…he will be calling us this week to tell us --yes we are having surgery within the next couple of weeks…or we have to grow her a little more…Maddie’s hole grew from a 5mm to a 8mm hole in 1 year…it is not closing…he is trying to prevent her from getting sick and to just get it over with…I agree lets just get it over with…save her the trouble of this later and her getting sick and in the hospital even more…this will also be done orthoscopically…this is good again when it is NOT your child…on a good note…Maddie does not need tubes for her ears at the moment…so we are waiting for cold and flu season…I am numb with all these decisions…I am pissed that my child is going to go through all of this…and I am scared to have her put under again…for the 4th time this year…I am not sure I have gotten over watching her be put under a couple of weeks ago…I still have haunting memories and pictures glimpses…of her going away…to watch Maddie be put under anesthesia was wrenching…I watched her have life to have having nothing…her eyes were bright and full of life to dark and hallow...like she died and went away…this is something I have not been able to comprehend or understand…I will do it again at least 2 more times this year…and that is a lot to take…as the doctors tell me to say strong…and smile for Maddie all I can think of is…that she knows that her mom is scared…just scared…so all of this is not a big deal…but it is when it is your child, your baby…I get the risks…I get the rewards…I get this is just the way it is…our “normal”… but at this time I have earned the right to be scared and pissed…it is time to try and let go again…but I am still working on how to…

10 comments:

  1. I am so sorry about all of this. Life probably does not feel so fair right now, and I will pray for you all. You never want to put your child through anything because this is your precious child. It seems like you never get a break lately, and I am glad you have a blog to come to and get those feelings out. We are all here to listen, support you, and remind you it is going to be okay. Hug that beautiful Maddie. It is amazing the strength the kids have when we do not. Hugs to you...

    ReplyDelete
  2. Oh, how I wish I had the right words to encourage you. Sometimes dealing with this stuff just sucks and there is no way around it or to make it sound pretty. Eventually the good will outweigh the bad, but even when we know that it, it doesn't always make the hard times any easier.

    We spent all night in the ER with Levi, who had difficulty breathing. I know it is just our life now & we do what we have to do, but that didn't stop the tears or the worry...and it won't stop the hospital bills from coming either :(

    ReplyDelete
  3. I hear you sister and totally agree that seeing your child go under is wrenching, I thought is was the trauma of OHS but I don't think it is, its just seeing him go into limbo, a controlled limbo but all the same, not good. I hope those docs can come up with a long term solution for Mads, this living from stricture to stricture is cruel. Love and cuddles for you and Divine Ms M. - Viv

    ReplyDelete
  4. Oh, wow, so much, so soon. I wish I knew what to say to help, but I'm at a loss here. Just hang in there, trust that these doctors have Maddie's best interest at the forefront of their thoughts and efforts, and stay strong. Please give that beautiful girl some BIG hugs and kisses from us, 'k?

    ReplyDelete
  5. Oh, how I feel for you, Emily has been put under about 10 times now and it hasn't gotten any better, I absolutely hate it still and it makes me so nervous. I know that Maddie is going to do just great like she always does, she is a miracle :-)

    ReplyDelete
  6. I wish I had words of wisdom or could say something to help ease the fear! Maddie is strong and although she may sense your "scared" she also knows how much you love her! Stay strong and make whatever decision is best for YOU and MADDIE!

    ReplyDelete
  7. Oh Kim, that is a lot to deal with!! I would be feeling the exact same way. Poor Maddie has been through so much the last little while. Keep us posted on the decisions being made...Hopefully this will be done and over with for you soon.

    ReplyDelete
  8. I just wish I could give you a great big hug. I know it's so hard to watch your child go under or to have major surgeries and to make hard decisions. It's so much to think about and I'm sure you will make the right choices for Maddie. Thinking of you both.

    ReplyDelete
  9. Oh boy. This is a LOT to go through right now. Poor little Maddie; Poor you! That's a lot to think about. I hope it will be over soon! Thinking of you guys and sending BIG hugs!

    ReplyDelete
  10. Big hugs coming your way. You and Maddie are in our thoughts!

    ReplyDelete