How does that make you feel?

It's been a few days since my last post. The day after I wrote the last post, I was so angry I could have boiled water on my head! My blood pressure has become an issue running way to high. As a proactive measure I am attempting to ramp up my exercise. I have been walking in preparation for running which will eventually lead to a half marathon this fall.
During one of these said walks with Ryan and Teagan, we talked about how angry I feel and how much I know deep down to my soul the medical staff in Chicago overlooked, under cared, and plain flat out dropped any sort of proverbial ball. We were assured time and again of all the planning put into Aidan's plan of care. I know I have relived every second of every day while we were in the hospital in Chicago. I can't count how many times Ryan and myself were blown off by the medical staff. I can't count how many times I questioned the reasoning behind the care Aidan received. Damn the hindsight. All 20/20 does for me is make me angry and sad. I want premonition instead!

Something happened to me during the conversation we had that night. It was so beautiful and spring like outside. Watching Teagan in the stroller reminded me so much of Aidan and how he LOVED to go on walks. Aid loved outside period, but he loved being with Ryan, Seven, and me while we all enjoyed the warmth of the sun and each other. All the anger I had seemed to slip as I said for the millionth time how I wish I wouldn't have let them ignore us. It all hit home to me, no matter how much I stew, no matter how horrible I feel, or how hard I wish that any little thing would have changed the outcome, I can never have my little man back in my arms. On some level I suppose acceptance.

I truly feel with every ounce of breath I can muster, Aidan's outcome would be different had his medical treatment been what it was promised to be. Now as I look back and start to become angry, all I feel is sadness. Not only the sadness and loss for our family, but for every other child and their family who may endure our same fate. I know that no matter how much anger or rage may live inside me it can not change our situation or anyone elses for that matter. All I can do is hope and pray to make it a little less for another family. If nothing else can come from our loss, I want and need to make sure the same mistakes are not repeated. If through our story I can reach out to someone and give them the strength to ask for a different nurse, a second opinion, or stand their ground just a little longer, then I will feel just a little better.  

I know in my own career this experience has driven home the fact that you should treat every person you care for as though they are your family member. That has always been my feeling. To watch as not just one nurse or doctor, time and again ignored us only solidifies this more.

I still get so angry I shake when I think of all the times we begged for help. I guess the hindsight in this situation only allows me to do the best I can, try to grow even the slightest. I try so hard to use all the anger I feel to drive me in a positive direction. A long walk, trying to be more patient with Teagan as she demands my attention for the 20th time, or to simply remember the happy times and be thankful for what we do have. It is NEVER going to be easy for me, but the challenge this presents for me is truly the highest mountain I will ever climb. 

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.

So frustrated!

Well this morning I decided to be proactive. I am sick of waiting for "official" autopsy results which I'm certain will NOT shed any light on Aidan's death. I am well aware of the hoops a person must jump through to obtain their personal medical records. However I hate that after just having Aidan's prepared and sernt to Chicago two months ago, I am having to jump again. So far this morning I have racked up 45 mintues of air time simply trying to get ahold of medical records and proving I have already signed and submitted a release of information. After all was said and done, I am still awaiting a return call from all three offices I so unpatiently waited on hold for.

The kicker for me this morning is that not only am I trying to get copies of Aidan's records, but that every time I am shuffled from office to office I am asked for all of his information. Date of birth, date of death (AHHHH), clinic visit dates, yada yada yada. There is only so many times I am able to relay that my son, who just days ago (or so it seems), was perfectly happy to be my partner in procrastination of cleaning, is now not here to help me find a million reasons to put off the laundry, the dishes, or the bathroom scrubbing.

While I am obviously capable of procrastinating on my own, all the fun stuff like building forts on such a rainy day, lining up the one-million cars scattered all over the house for a super speed race, and simply staying in our pj's all day don't have the same rewards.

I am reminded so often how truly lucky I am to have miss Teagan to pull me out of a funk. No rest for the weary while she's around! I have the best husband on the planet. Ryan knows when to just be next to me for support while the tears (and all the gd buggers) fall, and he knows when to be more if and when I need it. Ryan you are an the reason I find strength, I could never get by without you, love you. Even when all the snot and tears and most likely mascara are smooshed all over my face he just looks the other way.

So today's lesson for me is patience... when I am fresh out. Especially with the medical industry who seemingly failed our family. (I'm working through the bitterness!) I am well aware I am an irrational mother today, probably for the rest of my life. Just once I'd like to have all of the medical providers on the same page, and ...this is a big one...helpful and willing to go the extra mile.

I am sure that I will once again be shuffled back and forth, if and when medical records returns my call. Keep me in your thoughts so I can have the strength to not be the top story on the 5 o'clock news for mowing down their office simply with my words! After all someone has to get to the cleaning around this sty!
  

A little getting to know you...or me rather.

Well after much back and forth I have decided to start a blog. I swore I would never be someone who "blogged"! I suppose there are many things that I thought I would never do and sometime in the last few months all I thought I knew has changed. All of my friends and family know exactly what I'm refering to but if you are just reading this to pass the time I will enlighten you.
My name is Tracie and my son Aidan died on February 9th 2011. Aidan was an amazing little man who was a friend to everyone he met and who's magical personality would brighten the darkest of days. The driving ideas behind this blog are 99% theraputic outlet and 1% comic relief for myself  and anyone who will follow! My hope is that I can not only help myself through the hardest days of my life, but also reach out to anyone else who may be experiancing the same pain, loss, grief, or just plain raunchiness I feel. 

I will post again soon and hopefully won't loose my motivation to express my life through my words.