Mad, mad, mad

For the last week I have been going back and forth between really needing an answer and simply not wanting to know what happened in Chicago. My heart feels so heavy anytime I think about my little man hurting. I want to know why the nurses felt so "above us" that they were unable to acknowledge us when we begged them to help us make sense of Aidan's vitals. I want to know why the doctors felt Aidan didn't need extra help after his pulmonary pressures began to rise from the Nitric Oxide that was proven to lesson the workload on his heart, time and time again in procedures. I question why we felt so confident the doctors in Chicago would help "fix" Aidan.

Unfortunately hindsight is 20/20, and unfortunately anything I may think would help or have made a difference now will not bring Aidan back or get me an extra snuggle from him. I sure wish like hell it would though. I have spent the last week (if we are being honest here probably month) being so angry. I am angry I didn't get to sleep in his bed next to him while we were in the hospital. I am angry I didn't kiss him good-bye the night he coded and I left to see Teagan. I am angry I didn't triple check the nurses and doctors knew what they were doing. Every time I spoke with doctors in Chicago I was reassured how "different" Aidan's case was and how much preparation was going into Aidan's surgery and recovery. The second he came out of surgery, every single person taking care of him grouped him into the "normal 3 year old" category. When his blood pressure changed by 10-15 points from his normal, no one seemed to bat an eye...even after constant questioning. When Aidan was in obvious pain I had to ask repeatedly for pain medication.

I am well aware what a great team of doctors and nurses can do for a patient in distress, I've worked with such a team. To time and again ignore us and tell us to back off and let the nurses "do their jobs" was a slap in the face. If I forget everything I was ever taught in school, I still know in my heart the people who know a pediatric patient the best are their parents. If they say something is wrong, really feel something needs to change....LISTEN! A nurse is to be the advocate for their patient, not a pushover who allows "rounds" to dictate when and if a crisis warrants a bedside visit.

After battling to obtain Aidan's medical records from Primary Children's, I have lost a lot of motivation to obtain the records from Chicago. Within the next week the Autopsy results will be available and to be quite honest I am terrified what they will tell us. On one hand I want nothing else but to know what happened. My brain relies on scientific facts, most of the time! Hearing a doctor tell me my son's heart could physically not squeeze any longer when just two days prior I watched as he ran through the children's museum wearing full fire fighter gear (kids size!) does not add up. Surgery or not.

I am worried that the autopsy reports are going to be inconclusive and there will simply be no good (scientific) reason I am so lonely without my best friend. On the other hand if there really is proof that someone or something went wrong that could have been prevented, there is far to high of a chance I may completely loose my mind. It's not that I'm trying to find someone or something to blame, honest. I think for my healing process I need to know what happened, plain and simple.

I lay awake at night and replay every second, every time I was ignored or dismissed as the over protective mother. All of the what ifs and could have should haves. In the end what it comes down to is this is where we are today. If giving my life for his could change things, there would be no question. Aidan and his beautiful smile would be here now.  However for now I am left too much time to sit and think. The only solution being that instead of focusing on how angry I am, I will focus on something I can change. Something or someone that may use my time, energy, or experiences to better their situation.

I truly believe Aidan was here to bring magic and happiness to every person he met. Even his horse Copper pushed through her stall to give me an extra head bump today, I didn't even have food! All I can do is learn from how generous and carefree Aidan was and pray for the courage to carry that forward with me and share that with others as I live my life. There are minutes and hours where breathing seems to hard without him. The times that are the worst I try to remember Aidan's hand in mine or his smiling eyes asking for a treat he knew he shouldn't have and I pray to never forget him at his best.....happy.