Sunday, January 15, 2012

A Story From My Pastor

A story my pastor told me the morning after Aiden passed... she had been sitting with him just hours before he passed.

The night Aiden passed, he came to me in a dream. It was exactly like it had been earlier in the night. I was sitting next to Aidens bed, holding his hand and talking to him. (( For all those of you who doesn't know, Aiden had stopped breathing and was without oxygen for so long, he ended up brain dead. At the end, he was vented and there was no brain activity. The doctors told us, they could try one more medication to see if the swelling of the brain would go down. Eventually that night, his levels were out of control, and his heart was over 200 bpm..So to me, aidens mom, I felt like Aiden was telling me that we were done. He was ready to let go, stop fighting, and go to heaven.)) .

In the dream, I was sitting next to him, and he was standing over his body. He looked at me and asked if the baby could get up and play. She simply replied, well he is very sick, and he will not be able to play... Angel Aiden paused for a moment looking at the baby. He finally replied, that's me isn't it? Barbara Jean replied, Why yes Aiden that is you. He stood there for another moment, then turned around, ran into the light... As he ran into the light, he yelled.. it tickles..

The day we were planning Aidens funeral was very stressful on everyone. I thank my pastor for being so supportive because this story got me through many rough, sleepless night. I also thank my family, for always standing behind my decisions on treating aiden for his sickness!!!

Love Sarah
Aidens Mommy

This is on the facebook page of Aiden.. If you'd like to follow his face book page,

http://www.facebook.com/group.php?gid=125258280823156&v=wall

I know its been a longgg time since I've posted on this.. I'm hoping now that I'm starting to be able to talk about him without crying, that I will begin sharing stories of him that I cherish!!!

Thursday, September 9, 2010

letter to god

a day in my shoes...
i WAKE UP.. numb.. the only feeling i have is if im tired, or if im completely awake. some morning, im so awake i feel like i could put the worlds problems on my shoulders, and have an actual plan on how to fix them. other mornings, i want someone to bury me in the deepest hole, probably in the deepest end of the ocean. Needless to say, everyday in my shoes.. feels worthless.. or like i could careless if im happy, or if i was alive tomorrow.
I go to work, pretending my life is fine. I act as if im happy, and i always have something that will keep me happy. As people look at me, they think im happy...the only thing that might throw them off, is the fact that i dont do my make/hair..and it looks like hell...
customers/friends/people i know.. ask me how my son is doing, for they know i was previously expecting. I give a genuin smile, and say.. he passed on a few months ago.. .. now.. everyoen i say this to stops.. they look at me as if someones punched them in the gutt and they dont know what to say.. so i go on with a careful look on my face saying.. " ohh..hhes doing better now.. he fought a long and hard battle, and hes doing better than ever where he is." .... i know people do not know what to say to me, i dont know what to mentally say to myself as this statement passes my lips. this happaneds a few times a week, each time, the lie of me saying hes doing good in heaven, happens to feel harder and harder each time i say it.
as people come and go to my window, i feel as if i phsycially go through lifess motions,, but as if im not mentally there. or as if life is just passing me by, and im just sitting still.
as i travel through life, i feel alone. i feel as if i do not truely know anyone whos had such a horrible experience as i have, and as if im all alone. i feel like god is punishing me...i mean.. if he wasnt.. why would he take suuch a precious gift away from someone. needless to say, i feel alone.. and as if i have no need in waking up tomrrow..
3 monthsly ago, iw ake up to a perfectly happy baby..it happens to be the morning after mommies day..the day before aiden, jeff, and i watched movies and spent the day in bed together.. i did do a few treatments though... and by night time.. i was ready for the nurse to take over. i lay in bed, listening to aiden whine, as he wakes up to a nurse he does not know.. he does not want her..he wants his mom or dad, or his theresa.. i feel a sence of relief with the nurse, i feel like even if aiden freaks out, she will be ok with him, just patting his butt, and singing baby einstine, for that is what mommy would do.
the next morning i wake up bright and early, for aidens 6am treatment.. i felt horrible for falling asleep while i listened to him cry with the new nurse the night before. my poor son has been through so much already, the least i can do for him is comfort him while his time on earth is brief, and i would never get that chance after he passed on.

Tuesday, April 6, 2010

Pulling Aidens Vent

Today, they decided aiden would be ready to pull his vent. So, at about 330 they pulled his vent, put him on some increase bipap setting, and we are hoping for the best. He is having some increase work of breathing, and lower blood gases, but the doctors are still hoping... as well as I am that he is strong enough to be without his vent. My poor baby just cannot catch a break. He is such a trooper, but I think its just not enough for him when I'm not down there with him. He is brave, but has learned the difference between nurses, doctors, respitory therapist, and family. He cries everytime anyone other than family enters the room. Sometimes, he even gives me "the look" to make sure families okay.
He does still loveee his daddy though too!! Once they pulled his vent last time, dada was the first thing that popped out of his mouth!!! I dont really care though, as long as he is happy. The nurses said they are going to keep a close eye on him through the night, and see if he can get his strength up enough to stay on the bipap..
Jeff and I dont really know where we are going to do from here. I always thought about, "what if" the bipap didnt work.. but I am just not ready for that time to come. I just think aiden is to strong, and I dont want a machine to breath for him, especially since I think he is still strong enough to do it on his own. Hopefully, he will have a full 360 by morning. If not, maybe he will do better if im just there. I guess only time will tell :) Thanks again for all the love and support

Sunday, April 4, 2010

My letter To God

Dear God,
As I travel home from spending time with my son, I have lots of time to think about life. I pray for the strength, and health to get up every morning. Please give me enough will power to get through the day without being upset. I hope to not sin, be nasty, evil, or hateful. I want to be happy, loving, and helpful. I want the strength to show how thankful I am for everything you have provided for me in life, and all the challenges I have been able to conquer. I want for Aiden to know that hes loved, more than I could ever show or tell him. I hope he knows his happyness is one of the things I strive for everyday, and I would give anything to make him healthy.
I do want you to know, I find it unfair you have chosen such a sweet, loving baby to have such a horrible illness. Although I am not mad, I know you do have a plan for me. I will never know what the plan is ahead of time, or why you chose for things to happen. If I could ever ask for anything, it would be for you to take as much of Aidens pain away as you possibly could, even if it means inflicting it upon myself. For he is my one true love, and I depend on you to watch over him while I am not with him. I depend on the strength you give me, to make it through the week, so I am able to work..then go see him. Please help me get him heatlhy through this rough time in our lives, for I cannot be there as much as I was last time. Please help him in a safe return home.
Love Always & Forever
Sarah-Aidens Mommy

Wednesday, March 10, 2010

aidens sick again

Friday, Aiden's lungs were doing pretty good. He couldn't really stand to be off his bipap very long, but he could be off for few minutes. I went to work like any other morning, while grandpa don stayed at the hospital to hang out with our little buddy. After work, I arrived at the hospital to find the doctor ready to send aiden home. He said he was doing good, back to his "home settings", and that he thought he would catch something if he stayed at the hospital. Don and I packed all our stuff up and headed for the car. Laura, aidens grandma, soon came to see us. After we got just enough meds for the night, and had all our stuff packed up, i picked aiden up and headed for the car. I noticed he was having a little trouble breathing when we were almost to the car. I ran to the car, don ran behind me. He plugged the bipap in, while i suctioned aidens airway out, and tried to plug his other monitor in. Laura got to the car and began helping don with aidens bipap. Before I knew it, Aiden had stopped breathing. Laura scooped him up and ran him to the ER. She did CPR all the way to the ER as well.
After many minutes, the doctors came out and told us they had to put a ventilator tube down his air way to help him breath. He was breathing on his own at this point, just with some help of a few breaths. He told us to come in and see him. All I could think about was how we were just on our way home, and now hes on a ventilator. I walked in to my babies helpless body laying on a hospital bed. Everyone was working around him. I cried as i watched him fight his ventilator tube. He hated it, and wanted it out. I thought about the minutes he had been alone, in a room full of people he didnt know, while they got him stable.. and then i cried some more. I watched him and cried, i was very caught up in my thoughts and emotions. All the sudden, I heard familiar voice. It was the ICU doctor that had just sent him home. He began telling me that Aidens disease is a progressive disease and we needed to think about alternative care for him, or our next move. He went on telling me how even if aiden survives this episode, it will happen again and again, until he doesn't make it anymore. I stood there staring at him, not sure how to respond. He soon walked away. I soon felt mad, sad, furious, every emotion imaginable at that moment. In the past, I had taken Aiden to cincinnati, where they specialized in his disease. The doctors there knew aiden, they never questioned aidens ability to survive. I suddenly realized, i was enraged with anger. Aiden was, and had been sick for a little while. He had been sick before this, and just needed time to get over his illness. BUT i knew, he would get better and go back home.
Aiden has always been so full of life. He wakes up every morning with a smile on his face, and takes whatever life has to throw at him. I suddenly felt my fury rise. This doctor had only taken care of aiden one time, one day. I have fought this disease with him for the past seven months now. Aiden had been sick for a few weeks now, but he was still my happy baby. He was not ready to give up, and not ready for us to give up on him yet.
I soon realized, I was staring at the only thing that mattered, Aiden. He needed me, his mommy, to help him get better and stay calm. The vent tube was still down, but the nurse was now instructing a studen how to give aiden a few supportive breaths. We waited in that room for a few more minutes, until the nurse took us up to the PICU. We went to the same room we had left, only now, aiden would be on a ventilator. His lungs were weak and he just needed a break to get better. He slept pretty good that night.
The next morning, the respitory therapist told us she didn't think he needed the vent. She felt he was strong enough to breath on his own. A few hours later, they pulled the tube out of his airway. He did pretty good over the next few days. He did his treatments, and only dropped a few times. Monday morning rolled around before we knew it. The doctor had ordered an xray so we could see how aidens lungs were responding to the treatment. This was not good news, his whole right lung was covered with pnemonia. The doctor told us we had a few options. 1.)trec and vent him 2.)go home with hospic 3.)reventilate him 4.) go to cincinnati.
I didn't feel like these were things I wanted to do. Aiden needed time. Why couldn't they give him time. The therapist soon came back in to tell me, if aiden needed treatments every 4 hours, they could do it, there.. where I could stay with Aiden. Soon our lung doctor came in to tell me he would take care of aiden. Good care of aiden. He would get him better and ready to go back home. So we have decided to stay and be with him.

Sunday, February 28, 2010

Aidens Sick.. Again..

this morning, i woke up to the dogs fighting on my bed just like any other morning. I got up, peaked in at aiden(( seen that jeff was playing with him)) and headed downstairs to catch some breakfast before we brought him and all his stuff down. No sooner do I get downstairs before Jeff starts screaming, Sarah.. get up here aidens purple.. it took me only 2 seconds to get to his room and he was going purple fast.. his body was limp, he was not looking at me or concious of what i was saying. I tried suctioning him and nothing was working. Jeff was on the phone with the rescue squad while I decided to start CPR. His heart rate, and oxygen had dropped to zero. I honestly thought we lost him. Finally, after a few minutes of CPR, he started coming back up. He started breathing normally, and his heart rate went back up to the 150's. By that time, the ambulence was there. I decided this was the best time to get him to the hospital. He has been sick for the past few weeks, and I thought it would be the safest way to get him there. So Aiden and I climbed in the ambulence, strapped in and headed for St. V's. We got here and he still wasn't normal. He acted like he was very aggravated and he didn't want anyone bothering him. All the doctors and nurses piled in the room. They wanted the story and all his medical back ground. Aiden was not happy. He was very tired and wanted to take his nap. The nurses began suctioning him. A little while after that, everything started to settle down. Aiden began to take his nap, and Jeff and Melanie showed up. They brought all his machines from home, so we decided to put his bipap on. Everything was going pretty good..
Soo Melanie and I decided to grab some lunch to bring back to our room. We were only gone a few minutes, but when we got back, jeff and the nurse told us that aiden stopped breathing again. His heart rate had also dropped to. By that point, I started crying. I looked into his eyes, which to me.. were not normal. They were not MY normal healthy, happy aiden. He was looking right threw me. I tried to hold it back, but couldn't help but to cry. I felt like I was losing my baby! I began going through all the horrible things that had been happening, and thought aidens body was telling me it was ready to give up. I couldn't stop crying.. A few minutes later, aiden fell asleep. Jeff and Melanie finally got me all settled down.
A few minutes later, a nurse came in, she was ready to take us up to the PICU. They began getting all his machines ready to go upstairs. With all the russeling around, aiden woke up. He woke up his normal, happy baby. He was EVEN SMILING!! I was so happy.. it brought back all my joy and hope. Hope that he would be okay and make it another day. Thats all we really pray for, just oneee moree day.. everynight.. just one more dayy..
We got to the picu and they began doing all there tests and got us all settled in. I even went back home for the rest of aidens "stuff". He loves alllll his "stuff" and I just didn't think I'd be the same if he didn't have it all. When I got back to the hospital, the doctor told us aiden's right top lung was collapsed. He had a lot of mucus built up there, and just couldn't get it out. They are going to get him some meds to help thin it out, and hopefully make him feel better. I think he is already doing better. He has been talking and even trying to hold his toys again. I hope tomorrow, is a better day. I know we won't go home tomorrow, but I hope that we got home soon.. and I pray that we get.. onee more day....

Wednesday, February 17, 2010

Aiden's First SMA Checkup

Monday, Jeff, Aiden, And I traveled to Cincinatti again for Aidens first sma check up, since we've left the hospital. The doctors, nurses, and people we have never met, we so happy to see him. They kept telling Jeff and I how we were doing such an amazing job with Aiden, and how no matter what happens, most sma parents rise to the occasion.
His appointment was yesterday, Tuesday, and boy did he have a big day!! He went to see the lung doctor, all the doctors and nurses were gushing over how fat he has gotten. They did a quick chest xray, then told us everything looked wonderful!
Next, we went up to nutrition. They were very surprised at how fat he had gotten as well.. Everyone kept complimenting on his "rubberband wrists as my aunt calls them", and the fat feet he has. They decided to back his food off a little bit because all the fat is making it hard for Aiden to breath.
Then, he seen Physical therapy/and the Neurologist. The neurologist was so happy to see him as well. She had stopped up to the TCC everyday to see him when he was in the hospital for a month! She never really touched him, because she didn't want to spread germs from other children. She soon became Aidens favorite doctor. He always knew she would come to see him everyday, and that she would not hurt/touch him. Jeff and I had a long talk with her about how stretches and therapy is very important to aidens health, and that he should be doing both at home. Sadly, Aiden has to get let braces, to help losen his muscules out more. The good thing is, he only has to wear them at night!
After we seen neurology, she wanted a few blood tests done, and an xray to make sure aidens hips were still in the right place. He sits like a frog a lot, and that can make the hips come out of socket.
Everything went very well! We go back for another check up in 3 months. Hopefully Aiden will not get sick between now and then. The doctors said to always stay in contact! If he is ever sick, they need to know. Then they commented on how I was very good at that, and called everytime I suspected something was wrong, or was going to be wrong. It felt great knowing our cautious parenting was helping so much.
So Jeff, Aiden, and I got in the car to come back home. It is a 3 hour drive, and Aiden had not napped all day! The doctors let him play, and stretch and watch tv. He was so busy, he did not have to time to nap! So, we got to about Lima, and called it quits for the night. Aiden was cranky, it was late, and it was snowing pretty bad. Today, we are going to get up pretty early and head back home!
I want everyone to know how greatful we are to have such a great support system! You guys help us feel like anything is possible!