Yesterday, Nicks meds were taken to a level that I never thought we would ever see. About a year and a half ago Nicholas struggled with pleurisy really bad. The pain was nothing short of what I would compare to labor pains. I was nervous giving him 4 mg of dilauded. I had a mom message me she was giving her daughter 16 mg of dilauded, I thought she was insane! I gave Nick the 4 mg and it knocked him out cold. A year and a half later and a novel later, Nick is on 24 mg of dilauded, and is still quite aware of what is going on. He is on two fentanyl patches, 24 mg of dilauded, 21 mg of phenobarbatol, and 1 mg of ativan. He is quite sedated, but does respond when you talk to him. It is so hard sitting here listening to his raspy, labored breathing. The tumors are closing in, and breathing is getting more and more difficult. We were told this would happen. We were warned, but nothing could prepare you for this part of the nightmare. Looking at him now, it is hard to believe he was standing on a surfboard in September with James, from Make a Wish. Thats the part that makes this easy, is we lived with no regrets. None. No, was not a word in our vocabulary, How can we make this happen? was. Nick lived. Nick has been swinging strong the entire time, even asking out the love of his life while sentenced to a bed. It is cute as she comes over to sit with him. He holds her hand and is more than proud of his girl. Yesterday, lots of friends and family surrounded us as we prepared to increase the pain meds yet again. The other osteo families are faithful, more faithful than I could ever imagine. Jazzy, Jeremy, Owen and Zach all stand guard with Nick. I know inside these kids are scared. They fought this beast, and one of them is still fighting his battle. Yet, here he is. Its a sight I will hold dear to my heart forever. I love this kiddo more than life itself. My brain is on overload, as we keep the air positive around our warrior. Our friend Mr. Williams called me yesterday and asked that I listen to this song by One Republic, called I lived. He said it reminded him so much of Nick. It is about a kid that lives with cystic fibrosis, but continues to stare his challenges right in the eyes and live life to the fullest. I have attached his story and the song. Enjoy. Please pray for our kiddo. For peace and comfort. We love and adore each and every one of you. Live with no regrets! https://youtube/watch?v=z0rxydSolwU
Posted on: Sat, 27 Dec 2014 15:12:02 +0000
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