the week that will not end...on Tuesday we went bowling...we were enjoying some nachos...Maddie grabbed a hand full...I tried to sweep her mouth and lets just say her new teeth HURT! one thing led to another and at 4 am we were on the cold Wyoming road to Denver to get what ever was in out...we ran into a GI doctor that said that nothing was stuck -to me demanding a swallow study...sure enough there it was plain as day...olives, onions and hamburger...by 2:30 pm Wednesday Maddie was in surgery to remove the stuck food...during the time in the ER we were patronised by doctors and nurses on her demeanor...how well behaved she was how just calm she was...they kept telling me she just seems tired...by them interpreting her behavior like this...came with hours in the ER...triage is a bitch...Maddie can breath when she has a partially blocked airway...if she sleeps she will stop breathing for a bit and wake up with a gasp...she cannot eat or drink and her breathing sounded like a frog in her throat...so 15+ hours she went without food or water...but she was a good girl so she could wait (sigh)...by not being heard I became a very mean Mommy...and then the guilt on how I treat people seeps in...but I got what I needed for Maddie but I also burned some bridges in the process...it is a hard position and one I am not comfortable in...by Wednesday night we were released from the hospital...Thursday morning we were at the heart doctor...and Maddie is what they would call "normal"...that is the first time I have heard those words in regards to Maddie...her heart has made a full repair and we do not have to go back until next year!!! all awhile I was fighting with the GI doctor...calling other pediatric GI doctors...Maddie has a stricture and it has to be dilated now...I do not want selfishly to miss anymore work...I do not want to drag Max out of school...I do not want to stay in hotels anymore...I want this done now...and on this years deductible...so while we wondering around the Natural History Museum waiting for them to call me and confirm another appointment...I called the GI doctor again and they had a cancellation...we rushed to that appointment...Chad had words with the doctor on the situation...and now we have surgery today...Maddie will have her 3 dilation on her esphogus in 6 months...this time it will be done with a balloon...she is sitting beside me playing elmo and has no idea that in a few hours she will be under anesethia again and being poked prodded and her esophagus violated...thank goodness it is Friday...
Friday, December 30, 2011
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Thinking of you today, hoping you and your sweet girl are both feeling a little bit better.
ReplyDeleteOh good grief, just because she wasn't having a fit they made her wait...I HATE that! Poor girl and poor mommy and daddy, I'm sorry that your week has turned out so crummy, with any luck 2012 will bring a much needed break for all of you! Hang tight and know that I will be thinking about you all day and hoping the surgery goes well! Big hugs to you and to Maddie!
ReplyDeleteOh Kim, I cannot even imagine the stress of all that! Thinking of you guys today and hoping Maddie does well in surgery. Keep us posted!
ReplyDeleteMy prayers and thoughts are definitely with you. Sometimes life just does not seem fair...hang in there. You are such an incredible advocate for that precious little girl. Love to you all.
ReplyDeleteYes, please keep us posted! We are thinking of you!
ReplyDeleteKim I hope Mads is okay after surgery. It is just not fair that you have to fight to get her the care she needs, I know that must be so stressful for you. I understand that you feel the burden of this condition, chronic conditions are so wearing. Thinking of you
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