the rest of the story...

Maddie is out of the hospital and surgery went smooth...as the ground hogs day continued...I looked at a nurse and thought where was my handbook...where is the outline and notes of what to do if something like this keeps happening...the doctors and nurses act as if I should know...but I dont...I seem to make the wrong decisions on a daily basis with my kids...it is not easier to raise a "normal" child...it is just different...it is just more routine...and it is similar to me...I can relate to Max and his issues...I have had strep throat, viruses, ear infections, etc...but I have never had a restricted airway...I have never acted like I was ok even though I was in pain or discomfort...this trip to the Denver ER was different then the past...it was clearly apparent that Maddie has a unique health situation and that no one has answers...no one knows the "right" thing to do...we have a "plan" now and in place and actually put in to motion...Maddie had her esophagus dilated with a balloon and will have a follow up esophagram in a couple of months here in Casper WY and the GI doctor will also come and discuss the next step in March so we can stay ahead of her esophagus closing...and cross our fingers no more rushed trips to Denver...I was so sad and scared on this trip...Maddie stopped breathing waking up gasping for air and at 4 am I took off to Denver..just me and my little girl...4+ hours later we arrived at the hospital...instead of going to the ER I went to the doctors office...I did not want to get lost in the system...I knew she/we would be ignored because she is considered low risk because she is breathing...I walked into the office building changed her and got her ready for a long day of poking and prodding...her surgeon that repaired her at birth and the office I call when I need assistance turned there back on us...told us they no longer could help her...we were on our own I literally turned around and there was Maddie's GI doctors office I walked in and asked for a esophagram...they turned me away and sent me to the ER...and again we were lost in the system...just what I was trying to avoid...the ER doctor came in and had no answers just that Maddie looked fine but sounded a little froggy...the GI doctor came in and said that nothing was seen on the xray and it looked like Maddie just had a respiratory issue that her lungs were "big" and wanted to bring a pulmonary doctor into see her...I said no...I demanded a swallow study...then as a parent you start second guessing yourself...have I wasted all this time and energy on a respiratory issue...but I knew when I could hear the stuck food...and she was crouched in the corner that I was right and I had to fight...the nurses, the ER doctor and the GI doctor said to me there is just nothing wrong with her...they said that she was just tired that it must be her nap time...like I did not know her...finally 3 hours later after we checked into the ER we went in for our swallow study...she swallowed the barium and began to choke and gasp on the table...I just looked at them and told them I was right...and that I was pissed...the GI doctor would not come talk with me...he had the ER doctor relay the message that we would have surgery that day...I said I would not talk with her anymore I wanted the GI surgeon to talk with me...no messages...he came in and said I guess you were right that she has a blocked airway and that she was stricturing...they would not be able to dilate her at that time...he said they needed to move fast because her airway was at risk...REALLY now you want to move fast...now you want to help...I can not explain the rage I feel when I am not taken at face value for what I know is happening...like this is my first time...they wanted to put an IV in Maddie right then -she had gone with out food and water for 12+ hours and now they wanted do this...when I asked for it earlier I was told no...I told them no they could wait till she was under anesthesia...at this point it was pointless to try she is dehydrated and has flaccid veins and they would not be able to get a good stick...they again said that they had a lot of years of experience and that they were very good at it with condescending smirks...I appeased and said I would only consent if they used a numbing agent...sure enough 20 minutes of them trying and not getting it they conceded that it could not be done with out hurting her...when will people listen to me...so Maddie was in surgery by 2:30 pm the doctor said this will only take a 1/2 hour at the most...2 hours later he came and saw me...he said it was a tighter and harder then he expected...why do they not listen...the dr came out and said she needs to be dilated asap and that the doctor could do it Tuesday it was Wednesday...really that does not work for us...I am done by this point...I began calling other pediatric GI doctors...getting second opinions...I am tired of fighting...I am tired of trying to tell them we can not afford to take off work...I cannot emotionally handle anymore of this...I began calling her GI doctors office every hour until he squeezed us into an appointment...and there Chad and I pleaded and discussed and explained the hardship of us coming to Denver like this...it is not good for anyone...he then somehow got us in to surgery Friday and she was dilated...so full circle we have a plan...I am still shaken by this event...I am still questioning the medical community that seems to have all the answers but do not let the parents in on that very important plan...TEF/EA will not go away...it does not seem to be as manageable as we had first thought...Maddie she is a rockstar...stronger then I could ever be...more patient then I could ever imagine...through this all Maddie reminded me to fight for her...to go with my mommy instincts...and that she is SOOOO worth it....so now I struggle with how do I resume "normal" life...how do I look at others and care about there lives and what is going on with them...how do I be a friend...I cant really...I am consumed with how to be a mom...I am consumed with how do I prevent my children from hurting...I do not bounce back like I used to...I do not get to high with the good news and I do not get to low with the bad news...I am like a robot...I do what I need to do to get through the day...it is successful when both my children are safe and healthy...I want the sense of "normalcy" back...I want to get up and not think of medications, doctors, appointments....I just want to wake up and think what am I going to wear today...