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....