As I have neglected writing, I figure I should update the blog. I believe I have procrastinated writing mostly because I end up crying while I write. I figure I will start with something happy and maybe that will help! On Saturday I was lucky enough to take Teagan to an Easter egg hunt. Initially I was worried she would have to elbow her way in with so many kids around. Miss T put on her fancy dress and pink squeaky shoes and off we went.
The hunt turned out to be perfect. Teagan and I joined a few friends and together they took on the competition. Ok so "the competition" was 10-12 other kids under 3. Miss Teagan had a great time opening all the eggs and an even better time with her friends Jaejay and Alec. Not only was the egg hunt a success but I followed through on a goal I have set for myself. Absolutely no more waiting around "wishing" I had taken my kids to an activity. Even if we ended up being one in 50 families to hunt for eggs, at least we got out and gave it a whirl. So many times I have defaulted to playing around the neighborhood instead of taking Aidan to an activity all because I was worried about the crowds. I feel like I cheated both him and myself from those experiences.
Today is Easter. As I shopped for Easter the last few days, I found myself at a loss. I had no idea what to look for. Everything I saw reminded me of my Aidan. I knew I needed to get Teagan few age appropriate toys and beyond that? I knew I wanted to dye Easter eggs this year. When the time came to get everything organized, all I could do was remember how much fun Aidan had last year dunking (splashing and cracking some too). Teagan was perfectly happy with the plastic fun filled eggs this year and I am grateful.
In years past my little man learned just how wonderful chocolate Easter bunnies are. Last year 2010, Aidan was lucky to have the Easter bunny leave him an entire candy store in his basket! (or so it seemed) When Aidan discovered the chocolate bunny larger than his head he immediately asked to try some. Of course it began with him agreeing to only eat the bunnies ears. Then it was "just the head I promise mommy". Soon it was a battle of wills to see how far down the bunny we could eat, with Aidan wining most of the time. How can you say no to such an innocent beautiful boy?! Obviously he had my number! I vowed last year that should the Easter bunny bring another of these chocolate imposter's it would be rationed over days and not hours. Oh how I wish I got the chance.
This last week has seen an ocean full of tears. After so many hours of wondering, worrying, and waiting, we received the autopsy results. If you can call them that. After all was said and done we are left with an extremely limited result due to the way the autopsy was preformed. On the advice of an PICU doctor who had never so much as met Aidan we agreed he didn't need a "full autopsy". However the limited version which was preformed was much less than we had intended or agreed upon. Needless to say we all feel it was yet another way we are cheated out of time and answers.
Ryan, Teagan and I took Aidan an Easter basket today. When we arrived at the cemetery we were absolutely shocked to see they had removed the stake that was placed with Aidan's picture and obituary. The conscious part of my brain tells me this is due to lawn maintenance, but the part of my brain still screaming in pain with my soul only shouts louder "how could they"? The very best piece of me that I have laid to rest is now lying in an unmarked grave. I was taken right back to the hopeless feeling of knowing I can't comfort my son and make sure he's not alone or scared.
On the drive home I kept asking "why"? As we began to exit the freeway I thought to myself and the universe how sorry I am. and how much I miss Aidan. I thought if there was any way to know Aidan is safe and happy I would take it and allow myself to have that little comfort. Out of the corner of my eye I saw a huge hawk flying in to catch his pray. The hawk was so close I could see the speckles of color on his legs. All my life when I have needed a sign that things would be ok I am always answered with a hawk circling nearby. If I ever needed this sign it was today. I don't think it could have been any more clear. I know Aid is safe and taken care of. It doesn't lessen the hurt of my loss, but I take a small comfort in knowing he is in a better place.
Sunday, April 24, 2011
Thursday, April 14, 2011
Music
All my life I have loved music. I remember driving home from a day out boating and falling asleep on the speaker box in my dad's truck. No matter the circumstance if I have good music to loose myself in it seems the equivalent of a good therapy session. Yesterday as I was attempting productive cleaning and listening to the Ipod I was reminded of all the dance parties Aidan and I had. He loved music as much as I do, although most of the time he wanted a tune to rock out to! I wonder if he knew just how much happiness he inspired with his dancing.
I have learned music can get me through the roughest days. Looking back in life this has always been the case for me. First heartache really equals a Bon Jovi album...no judgements please I was a teenager! I can remember great times in high school rockin out to AC DC, which lets be honest who doesn't love them? A very scary car accident is replayed for me with the song Strawberry wine that played as the ambulance drove me to the ER.
As many of you watched a wonderful movie of just a few of Aidan's great memories at his "birthday party" you already know one of the songs that conjures memories of Aid's super sweet moves. Blackeyed Peas "Imma be" or as Aidan called it "Bummble Bee". After Aidan watching the music video at least a million times, I think part of the draw to the song was Fergie walking around in a swim suit, but Aid also loved a good base beat he good grove to.
When I worked in the SICU I remember a few times patients, mostly younger having their Ipods. I can only imagine some of the horrific pain they endured but I know the music helped to ease their hurt and provide a much needed distraction. Before we left for Chicago Ryan and I found Aid a perfect set of headphones. I know how hard it is to keep a three year old in bed even right out of surgery! We figured if Aid didn't want to watch shows he could at least listen to music. If only we had the opportunity to use our super distraction! The last while for me has been difficult to listen to any sort of sad song or even a love song without completely loosing it. The words seem to resonate in my bones and pull the hurt out of places I never knew I had.
In my quest for new music I found a new"ish" group. The Band Perry has a song that I couldn't quite get through the first few times. "If I die young" is the name of the song. Now, if I was at all tech savy I would link it up to the blog, but we all know that's not happening! So when you have a second give it a listen, just don't say I didn't warn you because the words hit home for me right now.
I wish so hard there was some way to make the hurt a little less, for me and for everyone else feeling the loss of such an amazing little life. It is a little over two months now and I still wake up expecting his little foot in my face! There is not a single second in the day I don't miss Aidan or wish he was here with me to push me a little further. Music is a small step in my healing process. I hope I can offer the same crutch to anyone else enduring our pain.
I have learned music can get me through the roughest days. Looking back in life this has always been the case for me. First heartache really equals a Bon Jovi album...no judgements please I was a teenager! I can remember great times in high school rockin out to AC DC, which lets be honest who doesn't love them? A very scary car accident is replayed for me with the song Strawberry wine that played as the ambulance drove me to the ER.
As many of you watched a wonderful movie of just a few of Aidan's great memories at his "birthday party" you already know one of the songs that conjures memories of Aid's super sweet moves. Blackeyed Peas "Imma be" or as Aidan called it "Bummble Bee". After Aidan watching the music video at least a million times, I think part of the draw to the song was Fergie walking around in a swim suit, but Aid also loved a good base beat he good grove to.
When I worked in the SICU I remember a few times patients, mostly younger having their Ipods. I can only imagine some of the horrific pain they endured but I know the music helped to ease their hurt and provide a much needed distraction. Before we left for Chicago Ryan and I found Aid a perfect set of headphones. I know how hard it is to keep a three year old in bed even right out of surgery! We figured if Aid didn't want to watch shows he could at least listen to music. If only we had the opportunity to use our super distraction! The last while for me has been difficult to listen to any sort of sad song or even a love song without completely loosing it. The words seem to resonate in my bones and pull the hurt out of places I never knew I had.
In my quest for new music I found a new"ish" group. The Band Perry has a song that I couldn't quite get through the first few times. "If I die young" is the name of the song. Now, if I was at all tech savy I would link it up to the blog, but we all know that's not happening! So when you have a second give it a listen, just don't say I didn't warn you because the words hit home for me right now.
I wish so hard there was some way to make the hurt a little less, for me and for everyone else feeling the loss of such an amazing little life. It is a little over two months now and I still wake up expecting his little foot in my face! There is not a single second in the day I don't miss Aidan or wish he was here with me to push me a little further. Music is a small step in my healing process. I hope I can offer the same crutch to anyone else enduring our pain.
Sunday, April 3, 2011
Lost for words
Tonight I sit here not sure what to write. I am overwhelmed with so many different emotions all jumbled into a huge ball of sludge. My days are so hopelessly quiet (yes there is still a quiet level of beautiful chaos with miss Teag). My nights are so long and uncomfortable with too much bed space. If you know of our sleeping arrangements a.k.a. Ryan and myself on the outer 2 inches of a king size bed while Seven steals the covers and the middle of the bed, you would laugh out loud! Throw Aid in for good measure and there was around 3/4 inch left!
I miss Aidan sneaking downstairs to snuggle with Teag and I in the weeee hours of the morning. I miss Aidan telling me he "didn't want to smell my stinky breath" ( upon daddy's coaching) and then getting mad at me for not snuggling him close enough at bed time. I am so empty inside without my best friend and partner in crime.
I am so absolutely blessed to have Teagan to keep me on my toes. I watch her pick up new skills daily and I am reminded of those special moments I was able to share with her brother.
Teag knows exactly who her brother is. She can pick him out in any picture and always gives him a big kiss. My heart aches that she will never get to race cars down the hallway with Aid, track down the "bad guys" out front, or most importantly use the stool to snag some candy or cupcakes off the counter while mom's downstairs. Although I'm pretty sure she will figure out the last one in no time.
Watching all of our little ones grow up way to fast only reminds me how short time is. It was just yesterday I took Aidan to the Zoo for the first time. His favorite animal was the Giraffes. We went inside to get a closer look and I will never forget Aidan's face when the Giraffe bent down and let Aidan pet his nose and then licked Aidan's hand! Aid was hooked after that. Every trip to the Zoo thereafter included a visit with his "buddy" the Giraffe who had given him a big slobbery kiss. Aidan's second favorite at the Zoo was the train. His eyes would light up as soon as he hear the whistle sound which was followed with "Mom lets go ride the train!"
This past Friday Teagan was able to make her first "official" trip to the Zoo. I say first because this is the first time she really "saw" the animals. I watched as she was amazed by all of the animals just as her brother was. The best and the most unexpected part of our visit was Teag's reaction to the train. Instead of being overwhelmed by the loud noise or the sea of people waiting in line, Teag stood up on my lap and started jumping and yelling with excitement! She turned and looked at me with a big smile and shining eyes. In that instant I knew her brother was with us, telling her all of his favorite things about the train and holding her hand to give her all of his courage to explore.
The last few months have strengthened the bonds of friendship and brought our family so much closer. I feel so happy and lucky to share moments with friends who are more family than friends. All of the good moments mean so much to me and are what helps keep me going.
I find myself so frustrated and mad that we still are so far away from any sort of closure, medically speaking. I'm not sure there will ever be closure for me with a loss so great. No results from pathology which is now blamed on "spring break" only adds fuels to the smouldering fire. I try extremely hard to only remember the happy memories. The happy times fill so much of my thoughts and yet I am far to easily reminded of the horrific last few days.... As I said earlier, I am a bundle of sludgy emotional goo, good, bad, and horrible all thrown in.
My brave man, I am so very sorry. I pray you are safe and happy. As you go please remember how much we love you, know how much we miss you, and keep your flash light handy so mommy can find you again one day.
I miss Aidan sneaking downstairs to snuggle with Teag and I in the weeee hours of the morning. I miss Aidan telling me he "didn't want to smell my stinky breath" ( upon daddy's coaching) and then getting mad at me for not snuggling him close enough at bed time. I am so empty inside without my best friend and partner in crime.
I am so absolutely blessed to have Teagan to keep me on my toes. I watch her pick up new skills daily and I am reminded of those special moments I was able to share with her brother.
Teag knows exactly who her brother is. She can pick him out in any picture and always gives him a big kiss. My heart aches that she will never get to race cars down the hallway with Aid, track down the "bad guys" out front, or most importantly use the stool to snag some candy or cupcakes off the counter while mom's downstairs. Although I'm pretty sure she will figure out the last one in no time.
Watching all of our little ones grow up way to fast only reminds me how short time is. It was just yesterday I took Aidan to the Zoo for the first time. His favorite animal was the Giraffes. We went inside to get a closer look and I will never forget Aidan's face when the Giraffe bent down and let Aidan pet his nose and then licked Aidan's hand! Aid was hooked after that. Every trip to the Zoo thereafter included a visit with his "buddy" the Giraffe who had given him a big slobbery kiss. Aidan's second favorite at the Zoo was the train. His eyes would light up as soon as he hear the whistle sound which was followed with "Mom lets go ride the train!"
This past Friday Teagan was able to make her first "official" trip to the Zoo. I say first because this is the first time she really "saw" the animals. I watched as she was amazed by all of the animals just as her brother was. The best and the most unexpected part of our visit was Teag's reaction to the train. Instead of being overwhelmed by the loud noise or the sea of people waiting in line, Teag stood up on my lap and started jumping and yelling with excitement! She turned and looked at me with a big smile and shining eyes. In that instant I knew her brother was with us, telling her all of his favorite things about the train and holding her hand to give her all of his courage to explore.
The last few months have strengthened the bonds of friendship and brought our family so much closer. I feel so happy and lucky to share moments with friends who are more family than friends. All of the good moments mean so much to me and are what helps keep me going.
I find myself so frustrated and mad that we still are so far away from any sort of closure, medically speaking. I'm not sure there will ever be closure for me with a loss so great. No results from pathology which is now blamed on "spring break" only adds fuels to the smouldering fire. I try extremely hard to only remember the happy memories. The happy times fill so much of my thoughts and yet I am far to easily reminded of the horrific last few days.... As I said earlier, I am a bundle of sludgy emotional goo, good, bad, and horrible all thrown in.
My brave man, I am so very sorry. I pray you are safe and happy. As you go please remember how much we love you, know how much we miss you, and keep your flash light handy so mommy can find you again one day.
Thursday, March 24, 2011
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.
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.
Sunday, March 13, 2011
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.
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.
Thursday, March 3, 2011
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!
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!
Tuesday, March 1, 2011
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.
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.
Thursday, February 10, 2011
No words
It is with a heavy heart I write this update. My amazing boy left his temporary home last night around 11:45pm. After a long battle my sweet super hero will not be getting back up. No one expected the end result of this trip to be such an amazing loss. Aidan was to be resting peacefully if not at the hospital then at home with us.
Instead Aidan's broken little body is awaiting his flight home while I know his spirit will be travelling with me.
This loss is so profound, as his mother I'm not sure there is any recovery great enough. My life will be far to quiet, to unbearably lonely to have any words to express it. Aidan made friends with anyone he met, and anyone who knew Aidan knows what an amazing little man he is. His loss will leave an unending hole and an irreplaceable loss is my heart and life. I will forever be a better person for having had the amazing time I did with him.
Please keep our family in your prayers as I am sure the next few minutes, weeks, and years will be the biggest challenge we will ever face. Thank you for all you love and support.
To my little man,
You are my heart and soul. Please don't be afraid as you move on as I know you are the bravest person I have ever known. You are my brave strong boy and I will take you with me where ever I go. While I stay here and miss your happy face and big strong hugs, you go run and play as you are meant to. You are free from the body that held you back and can run at full speed now, just remember to blow me a kiss as you whiz by at least every now and then.
I love you till the end of time with everything I have.
Instead Aidan's broken little body is awaiting his flight home while I know his spirit will be travelling with me.
This loss is so profound, as his mother I'm not sure there is any recovery great enough. My life will be far to quiet, to unbearably lonely to have any words to express it. Aidan made friends with anyone he met, and anyone who knew Aidan knows what an amazing little man he is. His loss will leave an unending hole and an irreplaceable loss is my heart and life. I will forever be a better person for having had the amazing time I did with him.
Please keep our family in your prayers as I am sure the next few minutes, weeks, and years will be the biggest challenge we will ever face. Thank you for all you love and support.
To my little man,
You are my heart and soul. Please don't be afraid as you move on as I know you are the bravest person I have ever known. You are my brave strong boy and I will take you with me where ever I go. While I stay here and miss your happy face and big strong hugs, you go run and play as you are meant to. You are free from the body that held you back and can run at full speed now, just remember to blow me a kiss as you whiz by at least every now and then.
Wednesday, February 9, 2011
Worse things getting worse
So our morning turned into night time...wait how long has it been since I've seen daylite? Aidan is stable for now with his heart rate up and his blood pressure down. He will recieve more blood products tonight along with lasix to get extra fluid out of his lungs. IF thats a big one, he tolerates the lasix and doesn't drop his pressures he will get Nitric oxide overnight in preperation for tomarrow.
Round 8:00am Aid will go back into surgery to find whats causing him to bleed. Lucky us/him. Hopefully he will get some sleep tonight because he definatly didn't last night. Aids little body has hit it's max but he is fighting like a champ. After such a rough morning Aid woke up and asked us to play tic tack toe....Aid is very good at tic tack toe but watch out because he cheats! More updates will follow and I have posted a blury webcam pic from tonight round 6:15p. Mom and Dad are wiped so I can't imagine how poor Aid feels. Everyone please keep him in your thoughts and prayers.
We love you little buddy.
Round 8:00am Aid will go back into surgery to find whats causing him to bleed. Lucky us/him. Hopefully he will get some sleep tonight because he definatly didn't last night. Aids little body has hit it's max but he is fighting like a champ. After such a rough morning Aid woke up and asked us to play tic tack toe....Aid is very good at tic tack toe but watch out because he cheats! More updates will follow and I have posted a blury webcam pic from tonight round 6:15p. Mom and Dad are wiped so I can't imagine how poor Aid feels. Everyone please keep him in your thoughts and prayers.
Good grief
Aid had an extremely long night last night. No sleep or semblance there of. As much as Ryan and I tried to tell the nurse Aid was not doing ok her and the residents stuck with the cause of the uncomfies as a high fever. Aid had cultures drawn from every bodily fluid he has to make sure he's not infected....still pending.
Finally around 6 am Aid's belly was so taught you could bounce quarters off of it. He threw up a ton of blood, and after yet more waiting around we finally saw a doctor... 30 minutes later, who moved Aids NG tube back up into his tummy. When they drained the contents we found close to the entire unit of blood he'd just received over night.
Aid's pressure tanked with-in 2 minutes and away the circus went. At least my asking the clerk to page the surgical team produced results. Otherwise we may have never seen them this am!
Right now we are headed down to get a CT of Aid's tummy and try to find the reason for the bleeding and make sure his shunts still open. Unfortunately, any training you have to stay calm in an emergent situation goes straight to hell when it's your own kid bleeding so much and hurting so much. All we can do is think happy thoughts and try to make Aid as comfy as possible. Please keep him in your thoughts today because it's definitely going to be a hard one.
Finally around 6 am Aid's belly was so taught you could bounce quarters off of it. He threw up a ton of blood, and after yet more waiting around we finally saw a doctor... 30 minutes later, who moved Aids NG tube back up into his tummy. When they drained the contents we found close to the entire unit of blood he'd just received over night.
Aid's pressure tanked with-in 2 minutes and away the circus went. At least my asking the clerk to page the surgical team produced results. Otherwise we may have never seen them this am!
Tuesday, February 8, 2011
A little set back
Well it looks like we jumped the gun once again! I think we all got our hopes up after Dr. Superina told us the shunt was open. The shunt still looks good but poor Aid can't seem to bring his blood counts back up. Right now he is getting a unit of red cells and maybe more with a platelet chaser later tonight.
As I mentioned earlier the little man is definatly gray only now he's itchy on top! Benedryll and blood have always been the right combo to get Aid on his feet before so lets all cross our fingers that it does the trick this time too.
On a lighter note, I'm pretty sure Ryan has a whole new respect and understanding for a catheter! He cringes everytime he sees it. Now just multiply that one little catheter by an internal monitor an external monitor and more than a few hours of labor...then he'll have something to cringe about! Gotta get the smiles where we can take them today :)
As I mentioned earlier the little man is definatly gray only now he's itchy on top! Benedryll and blood have always been the right combo to get Aid on his feet before so lets all cross our fingers that it does the trick this time too.
On a lighter note, I'm pretty sure Ryan has a whole new respect and understanding for a catheter! He cringes everytime he sees it. Now just multiply that one little catheter by an internal monitor an external monitor and more than a few hours of labor...then he'll have something to cringe about! Gotta get the smiles where we can take them today :)
Ouchy
Post op day 1...Aid is still brave and trying his best to be patient. I think we all hate him having to be NPO. We have met just about every resident, most of the surgical team, all of the pulmonary team and 90% of the Hematology team. Still don't know most of their names!
Aid didn't sleep well last night, mostly from pain and being checked and bled every 5 seconds! hehe Alright maybe not EVERY 5 seconds. For some dumb reason the residents decided Aid would be just fine useing tylenol or motrin for pain control. Yeeeaaah. After making our thoughts very clear, Aid was set up with a PCA pump early today which has helped a ton.
As is Aidan's usual plan (god only knows why) he dropped his blood count over night and just under half of his platelet count. Along with being swollen, battered and stitched up to within an inch of his life, Aid has achieved a whole new shade of gray this afternoon!
After an ultrasound and an echo the doctor seems confident Aidans shunt is open and doing AWSOME!! For now we are going to watch Aid's counts and hold off on a transfusion. We will hopefully "fingers crossed" rest and get our strength back for tomarrow. We have some sweet pictures to post but will have to wait for daddy to get back with our camera cable! Aid has said he misses all of his friends and family and wants to say thanks for all of your loves and well wishes.
We will post again soon and hoprfully get our pics up tonight sometime.
Aid didn't sleep well last night, mostly from pain and being checked and bled every 5 seconds! hehe Alright maybe not EVERY 5 seconds. For some dumb reason the residents decided Aid would be just fine useing tylenol or motrin for pain control. Yeeeaaah. After making our thoughts very clear, Aid was set up with a PCA pump early today which has helped a ton.
As is Aidan's usual plan (god only knows why) he dropped his blood count over night and just under half of his platelet count. Along with being swollen, battered and stitched up to within an inch of his life, Aid has achieved a whole new shade of gray this afternoon!
After an ultrasound and an echo the doctor seems confident Aidans shunt is open and doing AWSOME!! For now we are going to watch Aid's counts and hold off on a transfusion. We will hopefully "fingers crossed" rest and get our strength back for tomarrow. We have some sweet pictures to post but will have to wait for daddy to get back with our camera cable! Aid has said he misses all of his friends and family and wants to say thanks for all of your loves and well wishes.
We will post again soon and hoprfully get our pics up tonight sometime.
Monday, February 7, 2011
He's out!!!
Aid made it through surgery like a champ today. He is resting in the PICU now. Keep your fingers crossed for a quiet night but definatly don't hold your breath! Let me give you a breakdown of the little guys current standings.
He is on Oxygen, he has a NG tube which goes from his nose into his tummy. There is a central line under his left clavicle and an arterial line in his left wrist with 4 ports. They used the left side of his neck to harvest the jugular which now has a 5 inch inscision that runs from just under his ear to down just past the notch in his collar bone.
Aid has a pretty sweet (obviously not!) Mercedes shaped inciscion that starts in the middle of his sternum an runs all the way down his tummy and across to both hips.
We still have a long way to go before we are out of the scary woods, but for right now we are in good shape! Everyone keep your fingers crossed for no blood clots and a ton of good rest....for mom and dad too!
He is on Oxygen, he has a NG tube which goes from his nose into his tummy. There is a central line under his left clavicle and an arterial line in his left wrist with 4 ports. They used the left side of his neck to harvest the jugular which now has a 5 inch inscision that runs from just under his ear to down just past the notch in his collar bone.
Aid has a pretty sweet (obviously not!) Mercedes shaped inciscion that starts in the middle of his sternum an runs all the way down his tummy and across to both hips.
We still have a long way to go before we are out of the scary woods, but for right now we are in good shape! Everyone keep your fingers crossed for no blood clots and a ton of good rest....for mom and dad too!
Closeing???
We just got word they will begin closing up. Sometime between now and an hour from now Aid will be on his way to the PICU. I will update again sometime this evening when we get all settled. So far it sounds as though he's done great. Our rock star should be on the mend very soon.....I hope
Things are going...and going...
We just recieved an update on how Aid is doing. The doc has disected through the liver, down to the portal vein. It looks like our shunt is a go. They have started to harvest the vein they will use as the shunt. (his jugular) Aid will definatly get the chicks with all the "cool" scars.
Surgery is underway
Well as always we were late to pre-op this am! Ended up not mattering as the Doc's have grand rounds on Monday and start an hour later. Aidan was as brave as ever this am. No tears to be seen from him, even when we got into the OR. He is such an amazing kid. No I'm not mentioning any tears from mom or dad because really who wants to hear about it! (there have been plenty)
We hooked mama hippo up with a mask and an ID band to match Aid's. For those of you who haven't met mama hippo, she is Aid's lovie and makes every trip to the hospital with him! I'll try and find a picture to post.
The first few hours will just be getting Aidan prepared and getting all his lines in place. Hopefully we will have an update in the next hour or two and I will post the news.
We hooked mama hippo up with a mask and an ID band to match Aid's. For those of you who haven't met mama hippo, she is Aid's lovie and makes every trip to the hospital with him! I'll try and find a picture to post.
The first few hours will just be getting Aidan prepared and getting all his lines in place. Hopefully we will have an update in the next hour or two and I will post the news.
Sunday, February 6, 2011
The Shedd and a little note for Aid
As one last outting for the kiddo's we decided to go to the aquarium. What an awsome place! First off driving there we got lost....go figure! The **** "slight" and "hard" turns are gd ridiculous! In the end we found our way and drove right past Soldier Field.
The aquarium in Salt Lake could fit in the lobby of The Shedd. Aid was able to see 3 diffrent sharks, a huge sea turtle named Nickle, Beluga whales (my fav) and dolphins! One day we will go back when we can sit and watch the whales longer because we all loved them!
The rest of the afternoon was spent exploring and there was plenty to see! We came home to relax and watch the Super bowl which really meant eat all the yummy bad things for you! I sure hope Aid had a great day today. I think everyone with us had a bit of a heavy heart today. Tomarrow is the start to a scary journy for all of us. Aid is such a trooper and still says thank you to the doc's and nurses even when he has to get pokes. Unfortunatly our little man has been forced into growing up way to soon in some aspects.
Being that I am having a bit of a hard time taking my bug into a hell surgery tomarrow and that I am having an extreamly hard time doing so, I figure I could write to him on here so he can look back and see how we felt about eveything. So I appologize if the next little bit is super mushy....just scroll past if you like! hehe
To my little man, I know that you are my super hero rock star. I know that the next few weeks and maybe even months will be harder than any you will ever know. I wish that I could go in your place and you could be the happy wild little dude you are ment to be! I will stay by your side morning noon and night and feel every poke, prod, and pain you do as only a mother can. You are my world and my rock kiddo, so together with our our family and friends we will get through this. I know that these doctors are the one's who will restore all your super hero powers to the fullest and you will be back in all your full crime fighting glory before you know it. I love you to the moon and back.
So on a sad note with lots of butterflies and stones in my tummy, we head to bed and off to the hospital at 7:15am..way to early if you ask me! I will post an update here as soon as we have one. I know we have such amazing people in our corner. Thank you so much for all you well wishes and prayer. We love you all and wouldn't make it without you!
The aquarium in Salt Lake could fit in the lobby of The Shedd. Aid was able to see 3 diffrent sharks, a huge sea turtle named Nickle, Beluga whales (my fav) and dolphins! One day we will go back when we can sit and watch the whales longer because we all loved them!
The rest of the afternoon was spent exploring and there was plenty to see! We came home to relax and watch the Super bowl which really meant eat all the yummy bad things for you! I sure hope Aid had a great day today. I think everyone with us had a bit of a heavy heart today. Tomarrow is the start to a scary journy for all of us. Aid is such a trooper and still says thank you to the doc's and nurses even when he has to get pokes. Unfortunatly our little man has been forced into growing up way to soon in some aspects.
Being that I am having a bit of a hard time taking my bug into a hell surgery tomarrow and that I am having an extreamly hard time doing so, I figure I could write to him on here so he can look back and see how we felt about eveything. So I appologize if the next little bit is super mushy....just scroll past if you like! hehe
To my little man, I know that you are my super hero rock star. I know that the next few weeks and maybe even months will be harder than any you will ever know. I wish that I could go in your place and you could be the happy wild little dude you are ment to be! I will stay by your side morning noon and night and feel every poke, prod, and pain you do as only a mother can. You are my world and my rock kiddo, so together with our our family and friends we will get through this. I know that these doctors are the one's who will restore all your super hero powers to the fullest and you will be back in all your full crime fighting glory before you know it. I love you to the moon and back.
So on a sad note with lots of butterflies and stones in my tummy, we head to bed and off to the hospital at 7:15am..way to early if you ask me! I will post an update here as soon as we have one. I know we have such amazing people in our corner. Thank you so much for all you well wishes and prayer. We love you all and wouldn't make it without you!
Friday, February 4, 2011
Meet the Doctors
Aid is participating in a study to measure how well children with portal vein thrombosis (blood clot) use their calories. It's proposed these special kiddo's waste a ton of calories due to lack of blood flow. Aidan is only the 12th person to studied over a 5 year period. For the study we have to collect all Aid's poop for 3 whole days...lucky us! Afterwards the lab can burn the poop to measure how many calories are wasted and compare it to how many calories Aid has eaten over the 3 days. So when you have a bad day at work think of whoever works at that lab!
After the study we went down and met with Dr. Superina who will be performing the surgery. He is very nice and made sure we had plenty of time to ask questions and discuss our "plan of action". As it stands now we are due in pre-op 7:15 on Monday morning. They will start the surgery round 8:30 and begin placing his lines. Sometime around 10am they will begin dissecting down to and into the liver to find the portal vein. If the vein is good they will move on and harvest a jugular vein from Aid's neck. If all goes well the surgery should take 6-8 hours. Aid will be admitted to the PICU and will most likely stay there for a few days. We also met the Pulmonary team today who are very on top of the upcoming surgery.
Aid is a little overwhelmed after our long day today but came home to an extactic sister and big snuggles from Grammy around 4:00. If all goes well tomarrow, we will visit the Childrens museum and hopefully the aquarium and the Sears tower on Sunday. May as well wear the kiddo out before his big day on Monday! With any extra luck or time I will make sure and add some pics!
Tuesday, February 1, 2011
Packing
Well it's t-minus 2 1/2 days till take off. Not sure which is worse washing all the clothes so we can pack what we want or the actual packing! Aidan is just on the tail end of a good cold so keep your fingers crossed the doc's don't delay the big day. I guess this is really going to happen! Think warm thoughts for us as we head into the falling temps!
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