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EB Awareness Week
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Life After Tyler

2-5 to 2-9

So on Feb 6th we meet Tyler's parents for midnight bowling. We were still so excited for him to be home. He was left with someone we thought was responsible...... We made it to the parking lot when I got the call that Tyler was not breathing, paramedics had arrived and he was on the way to the hospital. They said the paramedics had shocked him to get this heart going, I was terrified at what that had done to his poor little chest. We raced to the hospital. Once we got there we found him, he was not doing well. He was all hooked up to machines, tubes everywhere. And what I feared- those paddles had torn apart his chest. Turns out that he had gone without breathing for almost twenty minutes. 2/7-2/8-2/9 I had not left the hospital. I was so tired. I did not want to leave him. Thank goodness a friend was with me- he was my rock at that moment. It seemed like everyone was giving up- but I had hope. We talked to Tyler telling him all of the things we were going to teach him to do, all of the skills that me and my friend had that we were going to pass along--me softball and my friend swimming. I wanted him to know that we had not given up on him!! 
If you were in the ICU with us you were not allowed to have sorrow or doubts- you would have to wait until my time with my nephew was over for you to say your goodbyes, I was hopeful that he was going to make it. Even some of the family was worried that I was not preparing for what was going to happen, that I was going to break down when the time came and would not be able to handle it. But my friend supported me and told them that I had hope and that I was the strongest person there. That maybe more of them needed some faith.
Tyler's parents even wavered- I told them that I wanted 100% proof that he was not there with us anymore because when we were in the room you could see that our little fighter was trying- he was pushing against the ventilator, we could see it, even a nurse saw it. If they did not want to take care of him because it was going to be too hard, I was!! We were told that 4 days in, Tyler's brain was not done swelling yet, my heart sank!! The doctors agreed to do one more test to see what activity they could see. They said it would take a while so I finally after 4 days left the hospital to take a shower. We returned as soon as we were done- praying the entire time we were away from him....

5 Comments to 2-5 to 2-9:

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best essay writing service on Sunday, September 30, 2018 1:37 PM
Great moments and responsible machines and updating the great college methods with us,keep follow the tylersebawareness blog. The perfect moments and preparing for supporting more showing the teachings.
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Trisha on Wednesday, June 5, 2019 9:16 PM
Thank you!

uk.bestessays on Tuesday, October 30, 2018 5:46 AM
This so heart-breaking. And there is the scariest thing to feel than to see someone you love suffering or being in a battle between life and death. We are all afraid to lose someone we love. And seeing them fighting for their life gives us hope that it is possible that they can make it. All we need is to have faith in God that He will allow to let that someone still continue to live. We should not lose hope with God, because all things are possible in Him around us. I hope you are doing fine now though it was hard to cope up.
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Trisha on Wednesday, June 5, 2019 9:21 PM
After all of these years I still don't understand why we had to loose my nephew but I don't want to disappoint Tyler so I keep moving forward to make sure everyone knows what EB is.

Trisha on Wednesday, June 5, 2019 12:58 PM
Thank you. Still trying to spread awareness. This disease is still so unknown that is it disheartening after 22 years of Tyler being gone. Thank you again for taking the time to visit the website and learn about EB.
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