Saturday, June 2, 2012

Ups & Downs

I have tried my best to keep things positive on the blog - and in life, I guess. I don't mean surfacey and fake. I just don't see a reason to be doom and gloom all the time. I genuinely do feel the hope and peace I have described before, but sometimes the reality of the situation sets in. This journey has been very difficult and trying. We have had so many wonderful moments, with a new found ability to focus on the blessings in our lives, but just as often have had dark, sad moments. So, here's your little fair warning for the not-so-positive nature of this post. I'm striving to chronicle this experience - good, bad and ugly.

This stay in the hospital has been very emotional. We were so hopeful for an uneventful procedure to place the gastronomy tube and fundo wrap on his stomach (to prevent vomiting and reflux). And while the procedure itself went very well, our sweet boy has struggled in the breathing department. We knew he was having difficulty swallowing before the procedure, and that was actually a major factor in the decision to go ahead with the port. This difficulty swallowing and clearing his airway has resulted in some fluid and congestion on his lungs. Since Thursday, we have tried chest PT, breathing treatments, diuretics and suction to help him clear the gunk from his lungs. Nothing was helping enough, so today they started BiPAP and a vibrating vest to try to help force air into his lungs and break up the congestion. On top of the respiratory troubles, the little stinker has decided he'd rather not sleep. Really, I think he'd love to sleep, just can't seem to get comfortable enough to stay asleep very long.

Given everything we've been through and dealt with so far, I know this setback doesn't seem like much. It may be extra emotional because now we have a diagnosis. Now we know that many of the problems he has won't get better, they'll only get worse. We have had very difficult conversations with our doctors this time around - talking about things like how his illness will progress, what it will look like at the end and decisions we may have to make when we get to that point. We are so thankful to have had amazing care throughout this process. Our doctors and nurses have truly been a Godsend. They have been candid and honest with us, while being very compassionate and empathetic, and we will be forever grateful for the care they have provided. Nevertheless, the subject matter is something that I prayed I would never have to discuss.

The last couple days have been especially tearful for me. I'm not ready to see him suffer. I'm not ready for one complication after another. We need more time to enjoy our boy and his precious spirit. I have full faith that he will continue to get stronger, his lungs will clear up and his breathing will improve; and it will happen in the perfect time, not my time.

4 comments:

  1. Karlee, I am so sad the past few days have not been good for Logan. I do believe that with the strong faith and courage that I have seen in you and Jeff,that no matter how many clouds get in the way,the sun keeps on shining on your beautiful family. I have this poem that I love and read often. It starts with~~ Hold on to faith; it is the source of believing that all things are possible. Hold onto hope; it banishes doubt and enables attitudes to be positive and cheerful. Hold on to love; it is life's greatest gift of all,for it shares,cares,and gives meaning to life. Your heart has a way of speaking louder than your mind. Just wanted to share this with you because all of the above reminds me of your amazing courage,strength,and love that you have for Logan and that beautiful family. I will continue to keep you all close to my heart and in my prayers. My family in Alabama has group of prayer warriors that we contact in times like these, Logan and your family has been added to their list.

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    1. So Sorry!! I am Mary Jane Caudle my son and Jeff graduated and played soccer at PCN. Sorry I meant to put this at the top. The NONNIE is what my grandkids call me.

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  2. I work with a girl whose sister went to school with you, or maybe your husband, I'm not sure. She shared your blog with me today. You have such a beautiful family. My heart broke as I read your story...I can't even imagine what your family is going through. I said a little prayer for your little man today and will continue to follow your story.

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  3. Dear Karlee -

    There are no words I can use to convey my empathy. Erica (Veronica's mom) and I just returned from visiting little Aimee Oliwek in the DC area and it was every bit as heart-wrenching as what we went through with our own sweet little one. At times while moving Aimee to get her comfortable she would cry real tears and I would melt with the most helpless feeling. I asked myself whether I am cut out for this endeavor with Alpers Awareness. I believe I am - only time will answer that question. But I do know that I would give up my own life in an instant to have little Aimee and your Logan back to good health, or any other little one in need. Know that you (and your docs) are doing everything you can for your little guy, for his quality of life, and there will be bumps in that journey. The Lord and Logan will tell you when it is time.

    Please let us know if we can help in any way.
    Marc

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